APA Newsletters

Volume 01, Number 2 Spring 2001
NEWSLETTER ON PHILOSOPHY AND MEDICINE
FROM THE EDITORS, ROSAMOND RHODES & MARK SHELDON FROM THE CHAIR ARTICLES HEIDI MALM "‘Do This, It Could Save Your Life!’ and Other Problematic Claims in Preventive Medicine" SUSAN PARRY AND CARL ELLIOTT "Genetic Ancestry Tracing and American Indian Identity"
ROBERT BAKER "The Co-Evolution of Bioethics, Computing, and Cyberspace: An Archaeological Perspective"
BOOK REVIEWS
Erik Parens and Adrienne Ashe, Eds.: Prenatal Testing and Disability Rights REVIEWED BY LEONARD M. FLECK Jodi Halpern: From Detached Concern to Empathy: Humanizing Medical Practice REVIEWED BY MATTHEW ROTTNEK
Rose Mary Volbrecht: Nursing Ethics: Communities in Dialogue REVIEWED BY MEG SMIRNOFF Gina Kolata: Flu: The Story of the Great Influenza Pandemic of 1918 and the Search for the Virus that Caused It REVIEWED BY RICHARD T. HULL

 

© 2002 by The American Philosophical Association ISSN: 1067-9464

APA NEWSLETTER ON
Philosophy and Medicine Rosamond Rhodes & Mark Sheldon, Co-Editors Spring 2002 Volume 01, Number 2

From the Editors

Rosamond Rhodes & Mark Sheldon At the December 2001 meetings of the Eastern Division, the APA Committee on Philosophy and Medicine invited four panelists to address the question of whether bioethics represents a challenge to ethical theory. This issue begins with Heidi Malm’s response. The Fall 2002 issue will contain additional replies. This Spring’s issue includes contributions on a variety of additional novel and thought-provoking issues. Together, they make this another worthwhile Newsletter. Preventative medicine has received a great deal of response from the public because of floods of product advertisements and media attention. Exercise! Take vitamins! Eat natural foods! More oat bran! Have mammography annually! Get your full body CAT scan here! We are all familiar with the explicit and implicit promises that life-style changes and screening programs save lives. But, these claims have hardly been examined. In "’Do This, It Could Save Your Life!’ and Other Problematic Claims in Preventative Medicine," Heide Malm raises the kinds of issues that others overlook and that philosophers are challenged to notice. She examines the brassy representations of preventative medicine and identifies a variety of hardly trumpeted problems that accompany adherence with the broadcasted recommendations. In "Genetic Ancestry and American Indian Identity," Susan Parry and Carl Elliott analyze the implications of using genetic testing as the basis for a determination of ancestry. Decisions on whether, what, and how to use genetic evidence can be particularly important when a group’s or an individual’s claims to rights or privileges turn on some particular ancestral ties. Yet, genetic evidence can be ambiguous, misunderstood, and misused. To illustrate the stakes and the problems of reliance on genetic evidence, Parry and Elliott describe the plight of the Lumbee Indians, a group that has not been but would benefit from being classified as Native Americans. Robert Baker’s piece, "The Co-Evolution of Bioethics, Computing and Cyberspace: An Archaeological Perspective," shares the layers of detritus that he uncovers as he packs up his old office for a move to Union College’s new Bioethics Center. The inventor y documents the simultaneous development of bioethics, computers, and cyberspace and Bakers account provides interesting anecdotes and curious links. The book review section offers thoughtful comments of some important books. Leonard Fleck regards Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch, as a very useful contribution to the literature on disability. For Fleck, the collection is a model of careful attention to a difficult private choice and the envisioned social implications of that choice. Matthew Rottnek’s contributes a review article of Jodi Halpern’s From Detached Concern to Empathy: Humanizing Medical Practice. Halpern is trained as a physician and a philosopher and Rottnek, trained as a philosopher, is now training to become a physician. Rottnek finds the book to be uniquely valuable because Halpern effectively uses philosophy (both the analytic and continental traditions) together with psychoanalytic theory and cultural criticism to offer a rich account of how physicians can more effectively provide care to their patients. Meg Smirnoff reviews Nursing Ethics: Communities in Dialogue. She is especially impressed with the insights in the atypical chapter on Feminist Ethics. Richard T. Hull’s review of Gina Kolota’s Flu: The Story of the Great Influenza Pandemic of 1918 and the Search for the Virus that Caused It, combines some personal reflections with his comments on an interesting and informative book. We want to remind you to please send along your announcements, letters, papers, case analyses, poetry, and stories. Directions for formatting your submission can be found at the end of the Newsletter volume. Please feel free to volunteer a book review. Your contributions and queries should be sent to Rosamond at the address below. Please include your phone and fax numbers and email address if you have one. Address mail to: Rosamond Rhodes Box 1108 Mount Sinai School of Medicine One Gustave Levy Place New York, NY 10029 Phone: 212-241-3757 Fax: 212-241-5028 Email: rosamond.rhodes@mssm.edu Mark Sheldon Phone and Fax: 847-328-2739 Email: msheldon@iun.edu

From the Chair

It is not hard to imagine the temptations of genetic ancestry tracing for a group like the Lumbee Indians. These techniques promise new ways to document ancestry. Although current technology is flawed and limited, one can imagine improvements that would allow members of the Lumbee Tribe to use genetic testing to help settle the question of whether they are descendants of the Cherokee or Eastern Sioux Tribes. Testing could also be used to determian Medical Association’s first Visiting Senior Scholar. Here is a report from the front.

Representing almost 300,000 physician-members, the AMA struggles with three distinct identities. It is a corporation with a range of profit centers and a focus on the bottom line. It is a trade association for doctors, advocating powerfully on behalf of their interests. And it is a professional association with a selfless commitment to medicine’s distinctive goods. About 1000 staff work at the AMA’s building on State Street. The eighth floor, where I have my cubicle, houses the Professional Standards Section, the unit with lead responsibility for the third identity. A few feet from my desk is the office of the Council for Ethical and Judicial Affairs (CEJA), which issues the AMA’s codes of ethics and its "judicial opinions." The Council itself consists of nine AMA members, mostly practicing physicians, who are elected to seven-year terms following nomination by the AMA President. CEJA’s canonical ethics texts include a one-page AMA "Principles of Medical Ethics" - a set of nine exhortations to virtue - and a slightly longer "Fundamental Elements of the Patient-Physician Relationship" - a set of six specific norms. There are also approximately 180 discrete CEJA "Opinions," that, in general, treat questions pertaining to professional practice. Issues include the reporting of spouse abuse, genetic counseling, organ procurement, sports medicine, advertising, fee splitting, gifts from industry, caring for the poor, and so on. Finally, there are the "Reports" that lay out justifications for many of the opinions. Taken together, these four components are the AMA Code. The first three are easily obtained in an AMA publication entitled Code of Medical Ethics: Current Opinions. As it happens, I have never used the Code in teaching medical ethics nor am I aware of anyone who does. Despite much excellent analysis in these materials, there are reasons for passing on pedagogical use. First, the Code is often inconsistent. While the Council and its staff do conscientious work on the opinions, each is drafted separately. What is said this year can conflict with language in an opinion drafted a decade ago. Second, the opinions are narrowly focused: they are not intended as a comprehensive set of norms nor are they accompanied by a background conception of the profession’s responsibility to society. There is no big picture. Third, the older opinions often fail to reflect the best thinking in the current medical ethics literature. Though CEJA members are far better informed than the representative physician, it is rare for them to be "specialists" in medical ethics, and the staff can only do so much to bring them up to speed during their two-day meetings every other month. In my opinion, CEJA functions, in part, as what advertisers call a "focus group." Its processes generate what may be a fairly accurate reflection of the collective moral judgment of America’s better-informed physicians; a judgment that is, to some extent, authoritative within medicine despite dozens of other codes governing medical practice in the United States. (See, for example, Medical Ethics: Analysis of the Issues Raised by the Codes, Opinions, and Statements by Brody, Rothstein, McCullough and Bobinski.) Gadly that I am, I have been pressing the point that the medical profession suffers from a damaging disconnect between the processes by which it articulates what authoritative ethical standards it has, and the processes by which it inculcates ethical standards in its novices and initiates. Those who are teaching mecould have powerful effects on the institutional structures that reinforce social identity, especially if a particular group begins to use genetic testing as a criterion for membership. The stakes are especially high than for American Indians, for whom the connection between genetics and identity carries tremendous economic and psychological importance. Official recognition of a group by the federal government as an Indian tribe has profound implications.

Articles

Do This, It Could Save Your Life!" and Other Problematic Claims in Preventive Medicine By Heidi Malm Loyola University of Chicago At a recent APA symposium sponsored by the APA Committee on Philosophy and Medicine, four panelists, including myself, were asked to address the question of whether bioethics represents a challenge to ethical theory.1 The question seemed to be ambiguous, but the answer was obvious either way. That is, if the question is asking whether the problems raised by medical practice and bioscience are so intractable, so unwieldy, or unopen to theoretical analysis and resolution that they show ethical theory to be a sham and devoid of pragmatic relevance, then the answer is certainly "no." For even if we could get by at the level of clinical practice with a purely casuistical or particularist model that is devoid of any theoretical claims or commitments (and I don’t think we can, because even the identification of the goal of a clinical encounter (e.g. health, or longevity, or preference satisfaction) requires some theoretical commitment), quite a bit of bioethics has to occur at the level of policy. For example, there must be hospital policy regarding the sorts of services that will be made available, social policy regarding the funding of research and the distribution of resources, legal policy defining one’s rights and duties in the medical arena, and governmental policy overseeing all of the above and more. Most, if not all, such policies involve a proscriptive element and thereby involve a theoretical component. On the other hand, if the question is asking whether medical practice and bioscience represent a challenge for ethical theory by creating new problems which need the aid of theoretical analysis, or by exposing problems in existing theories and concepts the need for refinement or new distinctions, or even by showing that heretofore consistent theories arc now inconsistent in practice and need to be revised, then the answer is an incontrovertible "yes". Anyone who recognizes bioethics for the subdiscipline it has become has to recognize that advancements in medical science and technology continue to create problems that need ethical analysis at many levels, including the purely practical level where policies have to be implemented, the level of applied ethics where policies are developed and defended, the level of nonnative ethical theory, and even the level of meta-ethics at which we test and refine the concepts used at the other levels. Moreover, the practical necessity of bioethics mandates that the problems be at least conditionally resolved. Since lives often hang in the balance we cannot be content with mere proposals, postulations, agreements to disagree, and idealist answers, as we might be with purely theoretical concerns. Instead, resolutions must be implementable in the imperfect real world. Given the above, the second interpretation of the question seems far more interesting than the first and I’ve chosen, then and now, to direct my attention to challenges that advances in medical practice and technology create for ethicists of the various levels. In particular, my aim is to expose some of the relatively overlooked challenges that arise in the area of preventive medicine. I’ll further focus my attention on that aspect of preventive medicine that aims to protect individual future health by encouraging people to "take this screening test," "avoid that food," or "take this drug" as a means to protect their own health. I’ll only marginally touch on preventive health measures that involve transmittable disease. Thus, my focus is on such common preventive practices as encouraging all women over 40 to have mammograms to detect breast cancer, encouraging all men over 50 to have PSA tests to detect prostate cancer, encouraging all adults to be checked for high cholesterol and initiate drug therapy for those in the top quartile, and encouraging specific dietary changes as a means to avoid particular diseases. An informal review of over 20 bioethics text books-the kind written or edited by philosophers-revealed that none devoted a section to the problems of preventive medicine in general, and only two included a section on the narrower concern of testing and screening for contagious diseases such as AIDS. Some included individual articles within other sections, such as articles about pre-natal screening or the morality of conceiving when there is a high probability of passing on a genetic impairment within sections on reproduction or genetics. But overall, issues related to preventive medicine, and in particular to recommendations aimed at protecting future health, received relatively little attention. The contrast is especially perplexing in light of the fact that preventive health recommendations are extremely common in our society, whereas practices involving cloning, surrogate motherhood, or genetic engineering—practices which receive a lot of attention in bioethics textbooks—are not common in society. Perhaps this relative lack of attention is due to an assumption that the issues of preventive medicine are not significantly different from those of traditional medical practice and thus not in need of a separate analysis. Or perhaps we are assuming that the issues of preventive medicine, at least those that are not subsumable under discussions of traditional medical practice, are not ethically problematic, especially when compared to such as things as cloning and organ sales. After all, preventive health recommendations merely aim to protect future health by diagnosing and treating disease in its pre-symptomatic stages and by preventing risk factors from developing into disease, and they aim to do this in relatively harmless and cost-effective ways.2 How could there be a problem with that? But these assumptions are mistaken. There are a number of significant differences between preventive medicine and traditional medical practice that preclude us from simply assuming that the problems of preventive medicine do not need their own ethical treatment. Moreover, many of the presumptions of preventive medicine, as it is currently practiced, have not been subject to the kind of ethical scrutiny that would expose their various problems. And even if the underlying assumptions were to be tested and found to be O.K., the task of doing the testing is one of our jobs as philosophers. In what follows I will develop these points as they arise in connection with efforts to justify preventive health recommendations and efforts to use the recommendations in for-profit marketing. My aim here isn’t to resolve each of the problems I raise, but rather to expose them and encourage attention from philosophically trained ethicists.3 Under what conditions are physicians, hospitals and various health-advocacy groups (such as the American Cancer Society) ethically justified in encouraging asymptomatic individuals to take screening tests, adopt drug regimes, or make dietary changes as a means to avoid particular diseases (or the debilitating effects thereof)? The general answer to this question is easy to discern: when the recommended reasonably believes that the recommended action will be good for the recipient, all things considered. ("All things considered" takes into account the probabilities of benefits and harms as well as the magnitude of those benefits and harms.4) The particular answer, on the other hand, one which specifies the conditions for such reasonable belief, is not so easy. And the source of the difficulty is the combination of the following two facts: First, preventive health recommendations and the procedures to which they lead are not risk free. The risks of the follow-up procedures and treatments are standardly included among the risks of the preventive recommendation because the risks would not have arisen were it not for the recommendation and the point of the recommendation is to respond to suspicious results.) Space limitations preclude a detailed account of the various sorts of risks5 but they include: (a) the very minor risks of the tests themselves (e.g., discomfort, Inconvenience, loss of time and money, exposure to low-dose radiation, etc.); (b) the much more serious risks of additional procedures, including surgeries, performed in response to a suspicious but ultimately false positive result; (c) the wide-spread risks of over-treatment, that is, treatment that the patient would never have received had she not been screened and treatment from which she gained no benefit (because, for example, the treatment was either ineffective or harmful, or treated a disease that never would have progressed to clinical relevance); (d) the risks of overly aggressive treatment, that is treatment that, although it was the best available at the time it was given, was later shown to be more aggressive (i.e., with more debilitating side effects) than was actually needed;6 (e) the risks that treatment for one problem will increase the risks for another; and (1) the risks of various psychological changes that happen when people begin to see themselves as patients rather than persons, see their bodies as a threat, and forgo basic pleasures in the hope of avoiding disease. Of course, the presence of such risks doesn’t show that preventive health recommendations should never be issued. It is quite possible that the benefits of the recommended tests and dietary changes will be enough to outweigh the risks. But this brings us to the second fact, namely, that the best evidence as to whether the benefits of a given preventive practice are worth its risks and harms comes from randomized controlled clinical trials on the use of the test or drug as a preventive measure. For only those trials can tell us how much the recommended treatment reduces one’s overall risk of death and at what cost in terms of harms and side effects. And such trials take a very long time to complete, typically a decade or more. Thus we have to determine whether and under what conditions health care professionals and advocacy groups are justified in encouraging apparently healthy people to take the tests or drugs, or to make the dietary changes, in the absence of clear evidence indicating that the recommended test, or drug, or dietary change (for ease of discussion I’ll just refer to screening tests for now) will actually be beneficial for the person, all things considered. On one side of the equation are all the harms and deaths that we could prevent if we recommend the promising but unproven test now, and on the other side are all the harms and death we will have unjustifiably caused if the recommended tests prove not to be beneficial overall. The preceding problem may not seem any different from the general problem of determining when a physician or other professional is justified in recommending any medical course of action and thus not in need of independent analysis. But there are at least two main differences between preventive medicine of the sort we are discussing and traditional medical practice which show the need for independent ethical analysis and argument. The first main difference can loosely be described in terms of the origin of the physician-patient interaction. In traditional medical practice, the prospective patient comes to the physician or other health professional seeking help or advice for a particular concern. The physician or other does her best to respond to the request and offer a recommendation (even a recommendation to do nothing). But in preventive medicine as it is currently practiced, the recommendation for a given preventive procedure comes unsolicited. That is, physicians, hospitals, drug makers and advocacy groups confront people who have no reason to believe they are sick (at least not in the relevant way) and say "do this" to better protect your future health. The physician-patient interaction is thus a consequence of the recommendation instead of the recommendation being a consequence of the interaction. This difference is important when we take into account both our general theory of moral responsibility that entails that the more one is responsible for the occurrence of an event, the more one is responsible for the outcome of the event, and the medical imperative to do no harm. It becomes even more important when we recognize the power or authoritative weight that people attach to medical recommendations. Although people have been trained to be skeptical of the recommendations of used car salesmen and other retailers, they have been socialized to trust health care recommendations and to believe both that the recommendation would not have been made had the recommended test not been tested and shown to be both safe and effective and that the motive for the recommendation is the welfare of the recipient. Furthermore, with respect to preventive medicine (and unlike traditional clinical practice) there is no imperative to make a recommendation either way. Bruce Charelton puts the point this way: When patients ask a doctor for help because they feel ill they can expect the doctor to do only his or her best. Responsibility is, in a sense, shared between the patient and the doctor as long as the doctor is acting in good faith. But the ethics that govern preventive medicine must be different. When a doctor initiates contact with a person who is not ill then doing his or her best is not good enough.8 The reason it is not good enough is that the clinical imperative that "something must be done," which applies to patient-initiated encounters and may be satisfied by something as simple as "listening and responding appropriately" does not apply to programs of preventive medicine.9 Since it is not the case that a recommendation of some sort must be made, then before one makes a preventive recommendation one needs solid ground for thinking that the recommended procedure will in fact be beneficial to the patient, all things considered. We could express this point in legal terms by saying that when a patient initiates the contact, the recommended treatment must be supported by a preponderance of the available evidence indicating that the treatment is likely to be beneficial for the patient, all things considered. But when the health care professional initiates the contact—when she seeks out persons who believe themselves to be healthy and offers to "optimize their future health"10—then the evidence must satisfy a higher standard. There must be clear and convincing evidence or, even stronger, evidence showing it to be beyond a reasonable doubt that the recommended procedure will be good for the patient, all things considered (that is, taking into account the probability and magnitude of the benefits and harms). These stricter standards assess not just the weighting of the available evidence but also whether the available evidence is of a sufficient quality or kind to justify encouraging apparently healthy people to undertake an activity with more than trivial risks, especially when encouragement comes from a trusted profession or organization.11 Unfortunately, some of our current screening recommendations fail to satisfy even the weaker preponderance standard. A second main difference between preventive medicine and more traditional medical practice focuses on the odds that a given person will actually benefit from the recommended procedure. This difference is most noticeable in the case of screening recommendations. That is, according the very nature of screening, the vast majority of people screened will not have the disease in question and thus not be able to gain any benefit from the recommended procedure (other than the minuscule benefit of being told that one does not have a disease that one had no reason to think one had in the first place). Yet they are still subject to many of the mentioned harms. In contrast, persons who are already symptomatic and seek traditional medical help are much more likely to be sick. They thus have a greater probability of benefitting from the recommended treatment, and more room for benefit (they are already symptomatic and thus start in a worse position) than persons who are screened. (Even the symptomatic people who turn out not to be sick can gain the benefit of knowing that the suspicious symptom was nothing to worry about.) This difference in the probability of benefit can greatly affect the reasonableness of incurring the attending risks. For according to probability calculus, the smaller the probability of benefit, the greater must be the size of the benefit, if it occurs, in order to justify the risks. Thus risks that are very reasonable to take when one is already known to be sick may be quite unreasonable to take when the probability is that one is healthy. In short, the key differences between preventive health recommendations and recommendations in traditional medical practice—differences relating to the origin of the physician-patient interaction, the probability of benefit, and whether a recommendation of some sort has to be made— can work together to create substantial differences in the quality and quantity of evidence needed to ethically justify the recommendation. In turn they help show that some of the common defenses for the practice of issuing preventive health recommendations prior to the acquisition of clear evidence indicating that the recommended measures will actually be good for people, all things considered, are ethically quite problematic. (By the way, I’m not claiming that all preventive health recommendations are ethically questionable. Some are backed by evidence from well-designed randomized clinical trials showing a statistically significant mortality reduction from the recommended measure and others are for diseases whose detection and treatment pose only minimal risks of harm. I’ll cover three such defenses. First, some people attempt to defend our current screening practices by maintaining that it is intuitively obvious, or that it just stands to reason, that early detection is good for people and thus that recommendations for screening are ethically justified. But the preceding points help to show the error of this "common sense" view. First, it is wrong to simply assume that ver y early detection through screening is beneficial. For some diseases it affords no benefit at all because the disease is easily treated at any stage or not treatable at all. It can also be worse for the patient than later detection because it can lead to over treatment, overly aggressive treatment, and simply knowing for many more years that one has a disease about which nothing can be done. Second, and more importantly, even for diseases for which we know that very early detection confers a treatment benefit over somewhat later detection (e.g., after symptoms appear) that fact can’t justify a screening recommendation. The reason is that the common sense view that early detection saves lives and is therefore good for people focuses solely on the benefits to the sick. Yet screening recommendations are given to vast numbers of persons we don’t know to be sick or healthy but who are statistically more likely to be healthy. Thus, the relevant question isn’t whether latently sick people will benefit from screening (which is the question addressed by the "common sense" view), but whether "this" person, that is, any given person in the target population will be better off being screened now when she has no symptoms of disease, or better off waiting and being treated only if and only when symptoms appear. Answers to that question have to take into account the risks and harms to the healthy as well as the benefits and harms to the sick. And when the risks of detection and treatment are more than trivial (as they are for diseases such as cancer), good faith even proof that early detection saves lives is not enough to justify a screening recommendation. We need to know that the size of the benefit that the sick person will gain—that is, how much it reduces her risk of death and at what (non-monetary) cost—is worth the myriad risks and harms that an apparently healthy person will endure in an effort to determine whether she is in fact latently sick. That sort of information can’t come from "common sense" or intuitive reasoning. (Consider this: prophylactic appendectomies would also save lives, but we don’t consider that to be an adequate justification for encouraging asymptomatic people to have them. One might respond that appendectomies are major surgeries whereas screening is not, but note that screening tests can lead to major surgeries. Moreover, prophylactic appendectomies guarantee that one will not die from an acute appendicitis while cancer screening only reduces one’s risk of death. This greater certainty of benefit would balance the greater cost of getting the benefit if such a benefit were a sufficient justification for encouraging asymptomatic people to have the appendectomy or screening. But it isn’t. Rational decision making requires that we take into account the probability that a given person will fall into a certain class (i.e., the class of persons whose appendix will rupture sometime in the future or the class of persons with asymptomatic cancer) and not just the benefits that will accrue from a particular procedure to persons who happen to be in that class. Similarly, we know that playing the lottery turns some people into millionaires. But a financial advisor who used that fact as grounds for encouraging her client to spend his paycheck on lottery tickets, without knowing the odds that he would win or whether he could absorb the loss, would be in violation of her fiduciary duty. Another problematic justification for our screening recommendations relies on partial scientific evidence about the benefits of screening, such as evidence showing an increased survival rate for persons whose disease is detected through screening.12 In other words, it is argued that screening recommendations are justified when and because studies show that people whose diseases are detected early, through screening, have a greater chance of living five or ten years after diagnosis than people whose diseases are detected later. But such justifications are either ignorant or manipulative. They are ignorant if the persons proffering the justification are unaware of the lead-time bias that is inherent screening. That is, screening always increases the average length of time that one survives after diagnosis because screening detects the diseases earlier.13 But that doesn’t mean the people are living any longer. They might be dying at the very same time but just knowing for a longer period of time that they had the disease. And the justification is manipulative if one is aware of the nature of lead-time bias but still attempts to use the statistics to influence lay people (who may be unfamiliar with the bias) to get the particular test. The third justification employs what I call the public health approach. This view defends broad-based screening recommendations (e.g., all women over the ago of X should get Y) on the basis of evidence showing that the tests would result in a certain number of lives being saved across the population. Such evidence is more readily obtained than evidence from randomized clinical trials. Yet this approach is problematic in that, to twist an old phrase, it sacrifices the smaller harms of the many for the greater benefit of the one. It says that we are justified in encouraging lots of people to undertake an activity in which we know that many of them will be harmed in small to moderate ways because we also know that a few of them will be benefitted in much greater ways. Yet when we are talking about non-contagious diseases such as cancer-diseases for which one persons’s probability of benefit from a given test or treatment is not at all affected by the number of other people who take the test or treatment—such inter-personal balancing of benefits and harms seems inappropriate and unfair. For non-contagious diseases, the only thing that should determine whether person X is encouraged to take the test is whether the benefits that X is likely to gain will outweigh the risks and harms that X is likely to suffer. We can’t know that just by looking at the number of lives saved across a population. In summary, each of the above justifications for our "Do this, it can save your life" recommendations suffers from a myopic focus on the benefits to the sick while ignoring the risks and harms to the healthy. As such, they fail to answer the question of whether or when health care professionals are justified in encouraging asymptomatic individuals to submit to various preventive measures when the measures and follow-up care have more than trivial risks and the probability of benefit is unknown. Yet answers are needed. Requiring randomized clinical trials for ever y recommendation is probably too strict, given that in some cases the risks and harms of detection and treatment are already known to be small and the benefit significant (as in testing for a transmittable disease such as chlamydia, where the test has a low false positive rate and the disease is easily treated with antibiotics). But we need to determine where to draw the line and how to defend it. Preventive medicine can save your life, but it can also harm and even kill you. The second main area of ethical concern that I will discuss focuses on the use of preventive health claims in for-profit marketing. It is difficult to watch TV, read magazines or newspapers, or go to the market without seeing multiple ads either touting a preventive procedure (for example: "Come in for your annual screening test at the center conveniently set up at Nordstrom’s", or "Take this drug to lower your cholesterol, ‘) or using a preventive health claim to sell an everyday product (for example, "Our bagels have oat bran which can lower your risk of colon cancer" or "our margarine can lower your cholesterol count by 15%"). Of course, there is nothing inherently wrong in a capitalistic society with encouraging healthy behaviors or using accurate claims to promote one’s products. But problems arise when (a) the claims aren’t backed up with good evidence showing an overall benefit, or (b) the claims are easily misunderstood by lay people, and (c) the claims are used by companies adopting wise businesspractices "Come, use our product") but are received by a public that still assumes that the motive behind a medical recommendation is the welfare of the patient and not the profit of the company Although we have moved far away from the paternalistic model of medicine, we have not moved to the other extreme of a buyer-beware approach. And the problems are more acute in the area of preventive medicine than in traditional medicine because (a) the relatively large target audience for preventive health claims creates more incentive for companies to exploit the claims, and (b) preventive health claims are currently subject to less government oversight and regulation than are traditional health claims. At least four issues of ethical concern arise in connection with the for-profit marketing of preventive health claims, I’ll cover each one briefly.14 The first sort of problem arises in connection with the for-profit promotion of screening tests, especially those that have not yet been established to be beneficial, all things considered. As things currently stand, the advertisers are allowed to promote the tests without listing the potential harms. They can note, for example, that mammography is the best tool we have for early detection of breast cancer and that early detection saves lives without listing the risks of a false-positive diagnosis and the corresponding risks of unnecessary surgeries. Nor are they required to explain that the odds that one will be harmed by the test and follow-up procedures are sometimes far, far greater than the odds that one will benefit. (For example, in the course of a decade of annual mammograms for women in their forties, a full one-third to one-half of the women will be subject to the costs, stresses and banns of additional tests, treatments, and surgeries, while only one out of two or three thousand will have her life extended.) Thus one ethical question that needs to be addressed is whether and to what degree advertisements for preventive health measures such as screening tests ought to be subject to the same truth in advertising regulations as advertisements for drugs and other traditional medical procedures (though the latter seldom get marketed). A second ethical issue is whether the truth in advertising requirements that we do have in place ought to be sharpened to help preclude the use of factually correct but easily misunderstood health claims as a means to promote business. For example, promoting a drug or test in terms of its relative risk reduction as opposed to its absolute risk reduction may mislead a lay person into thinking that the test or drug will confer a far greater benefit than it actually will. (A 50% reduction in one’s risk of death from X may sound like a huge benefit but be, in fact a minuscule benefit if the initial risk of death was quite low.) Similarly, faulty inferences by lay people may result from the use of incomplete statistics. For example, hospitals have promoted the use of their testing facilities with ads noting that 4 out of 5 men whose prostate cancer is detected through presymptomatic screening survive the disease. The likely inference by a lay person is that the screening is beneficial. But what the ads don’t state is that 4 out of 5 men whose cancer isn’t detected through screening also survive the disease because 4 out of 5 men with prostate cancer die of something else before the cancer has time to significantly affect their lives.15 Other ads make use of the claim that women have a 1-in-8 "lifetime risk" of getting breast cancer as a means to encourage women to use a particular radiological facility for a mammogram. Lay women might mistakenly assume that that means that 1 out of every 8 females born in the U.S. will get breast cancer, or, even more alarming, that 1 out of every 8 women will have her own life affected by breast cancer. (Women in their 80s have a 1 in 9 chance of getting breast cancer, but most of them will die with the disease and not from it.) Similarly, makers of cereal, margarine, pasta, bagels, and oatmeal now tout the fact that their products do or do not contain certain ingredients-oat bran, cholesterol, etc,—and allow consumers to infer that the product is thereby good for them. (The inference is aided by the consumer’s knowledge of generally promoted preventive health claims.) But the makers don’t have to note that the evidence of an actual benefit is scanty or limited to a narrow class of people. In summary, true statements can still be quite misleading and we need to determine whether, with respect to health claims, people should be protected from this problem or taught to be more cautious consumers. A third area of concern covers the medical and legal problems that can result from direct-to-consumer marketing of preventive health measures. For example, during the 80’s the National Prostate Cancer Awareness Week was heavily promoted by the company that made the PSA tests and products used in follow-up procedures. The promotion was so successful that men started asking their doctors for the tests in record numbers. Over time, PSA screening tests became part of the governing standard of care, even though there were no randomized controlled studies showing that the test conferred any mortality benefit. One problematic result is that such studies are now much more difficult to complete because it is harder to find men who are willing to risk being randomized into the non-testing arm and because researchers have to contend with the fear of contamination-that is, that men in the control arm will have the test done outside of the study. Another problematic result is that we now have a test with known substantial risks and no proven benefit as part of the governing standard of care against which malpractice is assessed. And although a physician who decides not to recommend the test because she believes it is scientifically unwarranted can try to avoid a malpractice judgment by citing the doctrine of the reputable minority, the risks of losing in a jury trial, as well as just the hassles of fighting such a charge, can be enough to motivate some physicians to recommend the test even though they believe that it is not medically justified. This practice further establish the test as part of the governing standard of care and exacerbates the problem. The last type of problem I’ll discuss arises primarily (but not exclusively) with respect to preventive health recommendations that are promoted through the media and carried out by individuals without physician involvement, such as dietary recommendations to eat oat bran to avoid colon cancer, to avoid alcohol to reduce one’s risk of breast cancer, and to limit salt intake to avoid the risk of hypertension. The risks associated with the dietary changes seem quite small when compared to the risks associated with the screening tests(e.g., the forgoing of favorite foods vs. the risk of unnecessary surgery). This would suggest that it will be easier to justify dietar y recommendations than screening recommendations in the absence of clear evidence of a mortality benefit. After all, no lone loses much if the recommended dietary changes prove in effective. But this view ignores what I have elsewhere referred to as mass communication risks.16 For example, when preventive health recommendations are promoted through the media and carried out by individuals acting on one’s own we run the risk that the people action on the recommendation didn’t properly understand it. They might mistakenly assume that they are in the target population when they are not. Or they might be unaware that the means to reduce their risk of death from one disease can increase it from another (as appears to be the case with alcohol, breast cancer and heart disease). Or they may read too much into the recommendation and assume, for example, that if a low sodium diet is recommended, a very low sodium diet must be ideal. (It isn’t, and it can actually be harmful.) This risk of misunderstand isn’t as worrisome in the case of screening and other preventative measures that have to be carried out in an office or laboratory because the clinical encounter provides an opportunity to correct the misunderstand. Another type of mass communication risk is the risk of harm that arises when an accurately understood and implemented dietary recommendations are out there, for example, the adults should be eating margarine instead of butter, limiting themselves to two eggs a week, or eating oat bran to protect themselves from colon cancer, they are very difficult to withdraw. There is no medium that will guarantee that each person acting on the recommendation will get the new information—much less believe it. And the issuance of blanket statements such as "margarine is just as bad as butter" and "eggs don’t raise your cholesterol lever", simply breed confusion and, in the long furn, foster distrust of all dietary recommendations, even those that are well supported. This latter risk should make us very cautious about making dietary recommendation prematurely. The final type of mass communication risk that I’ll discuss combines elements of the first two and focuses on the fact that preventive health recommendations can be used to misused by non-medical companies as means to promote their products. Labels proclaiming "Low Salt!" "No Cholesterol" "now with oat bran!" are seen on all sorts of products. I’m not claiming that providing this information is wrong or necessarily a bad thing. The concern is that the labels contribute to what social scientists call "availability cascades." 17 The key idea is that in the absence of complete information, people will tend to judge the seriousness and significance of risk based on the degree to which information about that risk is available to them-how much they see it around them. Thus repeated exposure to advertisements noting that a product is low in sodium, or high in fiber, or lacks cholesterol, combined with a background familiarity of preventive health recommendations, increases a person’s fear of disease and her perception of the risk of getting it. As these people share their worries with each other ("I only use egg-substitutes, how about you?"), and in turn demand more specialized products to quell their fears, and availability cascade occurs in which peoples fears play off each other and their perception of the risk becomes wildly exaggerated. And once these availability cascades get going they can be very difficult to stop or correct, especially when so-called availability entrepreneurs-that is, person and companies that stand to benefit financially from the cascades-have not motive to keep them going. Exaggerated fears are especially troubling when the source of the initial fear, for example, the particular dietary recommendation, turns out to have been misguided. Moreover, fears focused on one risk may distract our attention from another risk even though the other may actually be more risky. For example, women are more afraid now of breast cancer than heart disease (and younger women wildly overrate their risk), even though heart disease kills far more women than breast cancer. (This should make us wonder whether women who avoid alcohol because they’ve been told that it increases their risk of breast cancer are actually doing themselves a harm given the protective value that alcohol has against heart disease.) Once again, I’m not claiming that this or any of the mass communication risks provide sufficient grounds for prohibiting the use of preventive health claims in for-profit marketing. Instead, my point is that the presence of these risks establishes the need for caution when making preventive health recommendations, even dietary ones, and that policies need to be developed which set forth the conditions under which such recommendations can be used in for-profit marketing. To sum up, I’ve covered two general types of ethical problems that arise in the practice of preventive medicine-problems related to the justification of our preventive health recommendations and problems related to the use of such claims in for-profit marketing. And there certainly are other areas of concern. For example, problems in each of the above areas, as well as in the means by which risks and benefits are presented, raise corollary problems about informed consent. We also have to assess the demand and need for preventive medicine in terms of the allocation of scarce resources, including prevention of incredibly small risks with major consequences, such as the risk of anthrax or small pox, as apposed to the prevention of more common risks such as cancer. 18All of these problems of preventive medicine need their share of philosophers’ attention.
Notes
    The other panelist were John Deigh, Bernard Gert, and Daniel Brock. The symposium was arranged by Rosamond Rhodes. Although in practice preventive health measure such as cancer screening are often extremely expensive on a cost-per-year-of-life-saved basis, and do not save money when compared to treating cases that are discovered through traditional investigation. I discuss some of the problems and their potential solutions in much greater detail in "Medical Screening and the Value of Early Detection: When Unwarranted Faith L eads to Unethical Recommendations," Hastings Center Report, January-February, 1999, 26-37. Hence forth: "Medical Screening". Thus small probabilities of great benefit can outweigh moderate probabilities of small harm resulting in a balance that it is good for the person, all things considered. For a detailed explanation of these and other risks, as well as specific examples of these risks as they arise in our current screening programs for breast cancer, prostate cancer, and high cholesterol, se my "Medical Screening" at 31-32. This risk is especially distressing when studies later show that the ver y early treatment conferred no benefit when compared to somewhat later treatment, as appears to be the case with screening-detected prostate cancer in asymptomatic men. Actually, even that information doesn’t fully answer the question because we have to evaluate the degree of mortality reduction in terms of what it costs (non-monetarily) the patient. A 50% decrease in one’s risk of death from X may not mean much to the patient if her initial risk were quite low and the efforts needed to gain the reduction would significantly impact her life for the worse. B. Charlton, "Screening Ethics and the Law" British Medical Journal, 305 no. 3848 (1992):521. Id. P. 521 The phrase, but not the claim is from P.J. Edwards and D.M. Hall, "Screening, Ethics and the Law, ‘British Medical Journal, 305, no. 6848 (1992)267-268. I develop these points in more detail in "Preventive Health Recommendations and the Burden of Proof: When Does Your Health
Become My Business?", unpublished. Also, the standards need not apply when the recommended procedure is identified as experimental and the patient consents to it as such.
    Another defense of this type attempts to justify a recommendation to one population (e.g., women in their forties) by citing evidence of a benefit in another population (e.g., women in the fifties). But if the incidence of disease differs between the groups then even if sick women in the two groups will fare equally well from the presymptomatic treatment, we can’t assume that asymptomatic women will get the same benefit from screening and thus can’t assume that it is equally reasonable for them to accept the risks. I am ignoring fanciful counterexamples in which the people diagnosed with the disease are routinely given fatal treatments. In such cases, screening would not necessarily increase the average length of time one lives after diagnosis. I develop the following points in more detail in "Marketing Health: When Bioethics Confronts Bio-Business," in progress. Nor do they note that men with screening-detected prostate cancer appear to have the same 10 year survival rate regardless of the treatment they receive, including no treatment. See Jan-Erik Johansson, Lars Holberg, Sara Johansson et al., "Prostate Cancer Survival in Sweden," JAMA 277 (1997): 467-71, and David L. Hahn and R.G. Roberts, "Screening for Asymptomatic Prostate Cancer: Truth in Advertising," Journal of Family Practice 37, (1993): 432-36 "Mass Communication Risks in the Issuance of Dietar y Recommendations" presented to the American Society of Preventive Oncology, Washington D.C., March 1999. For copy please contact author. Timur Kuran And Cass R. Sunstein "Availability Cascades and Risk Regulation," Stanford Law Review vol. 51(April 1999): 683-768 I thank Rosamond Rhodes for this point.
Genetic Ancestry Tracing and American Indian Identity By Susan Parry and Carl Elliott University of Minnesota Last year saw the launch of a new Internet service called Family Tree DNA. A commercial firm sponsored by Genealogy by Genetics Ltd., Family Tree DNA advertises itself as "America’s first DNA-driven genealogical testing company." For fees ranging from $219 to $499, the company offers genetic testing to subscribers who wish to trace their genetic ancestry. Among the special services and projects on its menu are genetic tests for Jewish and Native American ancestry. The headline on the Family Tree DNA website declares, "Genealogy by Genetics is the greatest addition to Genealogy since the creation of the Family Tree!" Commercial genetic ancestry tracing may be new, but the techniques it uses are not. Scientists working in population genetics and genetic anthropology are using Y chromosome and mitochondrial DNA testing to trace the genetic ancestry of population groups all over the world. In 1998, geneticists used Y chromosome testing as a means of corroborating or denying the status of Americans who claimed to be the descendants of Thomas Jefferson and his slave mistress Sally Hemmings. Rick Kittles of Howard University provoked controversy in 2000 when he began using mitochondrial DNA and Y chromosome testing to attempt to trace the ancestry of individual African Americans to the areas of Africa from which they were captured and brought to America as slaves. A number of research groups have used similar techniques to detect evidence of Jewish genetic ancestry in groups whose culture or oral history suggests a Jewish heritage that has been lost or forgotten — most famously the Lemba, a black African tribe in southern Africa. For the past year, a multi-center research group funded by the National Institutes of Health and based at the University of Minnesota has been exploring the philosophical implications of genetic ancestry tracing for concepts of social identity. The Genetics and Identity Project has asked the question: how might new ways of mapping genetic variation change the way a given individual or group conceptualizes its identity? Historically, the notion of genetic constitution has played an important role in the construction of various political structures, and this is often still true today. The one-drop rule in the Jim Crow South; the fact that many countries still base citizenship on "blood"; the issue of who is allowed membership in tribal bands of aboriginal peoples, or who is allowed access to affirmative action: all these questions have been subject to a kind of informal genetic assessment, which new techniques of gene mapping have the potential to alter, undermine or reinforce. But gene mapping also has the potential to alter conceptions of identity beyond the political. It might alter conceptions of ethnic identity (who counts as African American or American Indian) or religious identity (who counts as Jewish) or family identity (who counts as a member of the Jefferson family.) All of these various aspects of social identity overlap in complex ways, and genetics is only one part of the mix. But clearly there is great potential for confusion when new knowledge of genetic markers conflicts with other kinds of markers of group membership, like a shared culture or historical narrative. Is a person any more a German, a Cherokee, a Jew or a Jefferson if his or her identity is corroborated by a genetic marker? Geneticists often emphasize that the techniques used to trace genetic ancestry are very limited and offer only a glimpse into the ancestry of any given individual. Two main techniques are currently in use. The first type traces genetic markers (polymorphisms) on the Y chromosome. The Y chromosome is passed down virtually unchanged from father to son. Thus the Y chromosome of any given man will be a copy of the Y chromosome of his father, which will be a copy of the Y chromosome of his own father, and so on. Tracing the Y chromosome offers any given man knowledge about one — but only one — of the many genetic lines in his ancestry. Any man has four grandparents, two of whom are his grandfathers, but Y chromosome tracing will connect him to only one of those four people. Similarly, any man has 128 great-great-great-great-great-grandparents, but Y chromosome tracing will track his genetic lineage back to only one of those ancestors. For women, the story is slightly different. Women generally do not have Y chromosomes, of course, but they do have mitochondrial DNA, which is passed down through maternal lines. Mitochondrial DNA is present in both men and women, but only women pass their mitochondrial DNA on to their children. Like the Y chromosome, mitochondrial DNA includes markers that geneticists can use to trace maternal genetic lineages. Thus any person, male or female, can track his or her ancestry through his or her mother, his or her mother’s mother, and so on. This kind of ancestry tracing is subject to limitations similar to those of Y chromosome tracing, in that it offers knowledge about only one of many genetic lines. A person whose mitochondrial DNA is traced back 9 generations will get information about his or her links to only one of 512 genetic ancestors. This may sound like a slender foundation upon which to build an identity. Yet given the enormous importance often placed on genetics — for kinship, citizenship, community membership of all kinds — genetic ancestry tracing could have powerful effects on the institutional structures that reinforce social identity, especially if a particular group begins to use genetic testing as a criterion for membership. The stakes are especially high than for American Indians, for whom the connection between genetics and identity carries tremendous economic and psychological importance. Official recognition of a group by the federal government as an Indian tribe has profound implications for federal financial support, land treaties, and sovereignty claims. Similarly, an individual’s recognition by the federal government as an Indian has profound implications for access to educational, health, and housing programs. The most commonly used marker of American Indian identity is the so-called "blood quantum," or percentage of "Indian blood." Genetic ancestry tracing such as that offered by Family Tree DNA offers the lure of hard, scientific corroboration of American Indian ancestry, which could in turn be used to confirm or deny access to government ser vices and participation in government treaties. Should American Indians embrace genetic ancestry tracing? If they do, how might this change the relationship between Indians and government bodies? Ultimately, the question of whether to use genetic ancestry tracing is a matter for American Indians themselves to decide. What we outline here are some of the broader issues at stake in the debate, as well as a cautionary note about the ways that genetic ancestry tracing might be misused.
Genetics and the Bureau of Indian Affairs Who counts as an American Indian? The answer is complicated. The most influential statement of American Indian identity, the Indian Reorganization Act of 1934 (IRA), defines "Indian" as follows: All persons of Indian descent who are members of any recognized tribe now under Federal jurisdiction, and all persons who are descendants of such members who were, on June 1, 1934, residing within the present boundaries of any Indian reservation, and shall further include all other persons of one-half or more Indian blood. Blood quantum is an enormously complicated issue because it is used in so many different ways. The federal government has two main types of relationships with American Indians: those with individual American Indians and those with tribes. In determining whether a tribe receives federal recognition (and is thus able to claim rights to federal financial support and sovereignty), the federal government does not use blood quantum explicitly. However, federal recognition is based on seven mandatory criteria (25 CFR Part 83), two of which refer to membership and ancestry. 83.7(d) requires that groups petitioning for federal recognition describe membership criteria and how they are applied, while 83.7(e) requires that current members of the petitioning group descend from a historic tribe or amalgamated tribes. Blood quantum thus plays an implicit role here, in that tribes determine their own membership criteria and these criteria vary greatly among tribes. Some tribes require that members trace their ancestors as a basis for tribal rolls; others require anything from 1/32 to _ "blood" of that tribe. Even more complicated is the role of blood quantum in the relationship between the federal government or a state government and an individual American Indian. Many Bureau of Indian Affairs (BIA) regulations governing the administration of federal benefit programs rely on one-quarter or one-half blood quantum requirements; e.g. the Indian Hiring Preference, Vocational Training for Adult Indians, and Educational Loans and Grants. Other programs require blood quantum and proof of tribal enrollment. Because these regulations vary so greatly, it is possible for a given individual to qualify for health benefits, for example, but not employment benefits. Despite great variations in how "American Indian" is defined, most definitions include some mention of ancestry and many refer explicitly to blood quantum. The amount of debate and disagreement here is high, in part because there is so much at stake. Given this history, policymakers may well be tempted to use genetic ancestry tracing to do what many tribes have been doing less formally for a long time. Yet genetic ancestry tracing may reduce Indian identity to a matter of genetic constitution, leaving out other (and arguably more important) aspects of identity: language, social history, cultural inheritance, and so on — especially if the importance of genetic ancestry tracing were to become enshrined in law.
The Case of the Lumbee Indians The Lumbee Indians provide an interesting case study for the kinds of temptations and dangers raised by genetic ancestry tracing, precisely because their identity has been a matter of such controversy. The Lumbee Indians are the largest Indian tribe east of the Mississippi River. They live mainly in Robeson County, North Carolina, which is the most ethnically diverse county in the South: 36% white, 25% black and 39% Indian. Anthropologists used to identify the Lumbee as a so-called "tri-racial" group, as a way of indicating a "mixed" genetic ancestry, but the Lumbee have always identified themselves solely as Indian. The Lumbee have a long histor y of maintaining a distinct identity separate from the whites and blacks of Robeson County. Ancestry has always been important to them, but blood quantum has not. Although the state of North Carolina has recognized the tribal status of the Lumbee since the 1880s, attempts by the Lumbee to receive federal recognition have met only limited success. That is, the federal government has granted them a kind of recognition that specifically excludes the right to receive federal services. The nature of the Lumbee Tribe raises hard questions about possible implications of genetic testing. So-called "real" Indian tribes have often used genetics — blood quantum — as a way of determining who counts as a member of the tribe. And in fact, the Lumbee today rely on ancestry to determine tribal membership. Ancestry has always played an important role in Lumbee identity, in that acceptance into the community depends partly on ancestral ties. Yet a group like the Lumbee have the most to lose by linking identity to genetics. If a genetic standard is used to determine group membership, it might well reinforce notions of "racial purity" implicit in government policy — notions that constitute part of the reason why the Lumbee have not received federal recognition in the past. The Lumbee Indians have unique characteristics that set them apart from other tribes. First, there is a long-standing debate about the origins of the tribe. One theory has it that they are descendants of Raleigh’s Lost Colony on Roanoke Island. (1587/1590) According to this theory, the colonists amalgamated with a native tribe and moved inland. Another theory has it that the ancestors of the Lumbee moved from their former coastal homes in the Black River region to the banks of the Lumbee River in North Carolina. This theory maintains that the ancestors of the Lumbee settled in Robeson County as early as 1650. Others argue that the Lumbee are descendants of the Cherokee, while still others argue that they are descendants of the Eastern Sioux. The documented history of the Lumbee Indians begins in the early 18th century when Scottish settlers described encountering a native tribe practicing a "European culture." The Lumbee Indians have no remaining language or indisputably distinct cultural practices, never kept tribal rolls, were never a reserved people, and have no treaties with state or federal governments. The name "Lumbee" was adopted only in 1953. Most scholars agree that they are an amalgamation of at least several tribes and other individuals. Unlike most American Indian tribes, they have defined "their identity primarily in terms of shared ideas about themselves as a people," rather than genetic ancestors. The Lumbee Tribe has made many petitions for federal recognition that includes full financial benefits. In 1985 the Bureau of Indian Affairs produced a Final Determination that the Lumbee Nation does not exist as an Indian Tribe. In that document the Assistant Secretary determined that the Lumbee failed to satisfy five of the seven mandatory criteria and further that because of the group’s "mixed and uncertain ancestry, the geographical dispersion of its continuity, and the group’s lack of inherent social and political cohesion and continuity," the Lumbee fail to satisfy federal requirements. But rejection by the federal government has not changed how the Lumbee Indians view themselves; members carry an overwhelming sense that "we know who we are." Despite this strong sense of self-preservation in the face of diversity, there is also a strong sense within the Lumbee Tribe that the federal government has treated the tribe unjustly. It is not hard to imagine the temptations of genetic ancestry tracing for a group like the Lumbee Indians. These techniques promise new ways to document ancestr y. Although current technology is flawed and limited, one can imagine improvements that would allow members of the Lumbee Tribe to use genetic testing to help settle the question of whether they are descendants of the Cherokee or Eastern Sioux Tribes. Testing could also be used to determine the range of genetic variation among Tribe members. Databases could be constructed that might link the Lumbee to other American Indian groups. Genetic ancestry tracing could finally give the Lumbee Indians the "proof " of Indian ancestry they need for federal acknowledgement and benefits. But would it be worth the risks?
The Risks of Genetic Ancestry Tracing One obvious risk of a genetic test for ancestry is that it will fail to corroborate an ancestry claim. The results of a test are never known in advance. Any group or individual staking a claim on a genetic test runs the risk that the results will be reasonably interpreted in a way that runs counter to the interests of the individual or group being tested. It is also important to remember that genetic ancestry tracing has different implications for individuals than it does for groups. For individuals, genetic ancestry tracing can be used to corroborate claims of a genetic relationship to a particular group, and it can fail to corroborate these claims, but it cannot be used to disprove such a relationship. If an individual Lumbee Indian were to get mitochondrial DNA testing, he or she might find that her mitochondrial DNA contained markers tracing back to one of the five Native American "haplogroups." This might be taken as evidence corroborating his or her ancestry claim. Yet that individual might well have found that his or her mitochondrial DNA traces back to Europe instead. Even if this were the case, however, it would not disprove Indian ancestry. All it would show is that one (out of hundreds) of his or her maternal lineages traced back to Europe. All of the others may trace back to the Americas, but those would not be detected by the test. Genetic ancestry tracing could play out differently for groups. For example, if mitochondrial DNA and Y chromosome testing were performed on a representative group of volunteers that identified themselves culturally and historically as Lumbee, the results would likely show that a certain percentage of the group had markers tracing back to one of the Native American haplogroups. If it were a high percentage, then federal authorities might be inclined to accept this as evidence that the Lumbee were "real" American Indians (and not, as the BIA put it, a group with "mixed and uncertain ancestry.") Yet what would count as a high percentage? Any figure would be meaningless without some point of comparison. High compared to other North Carolinians? Other Americans? Other American Indian tribes? How should a group’s ancestral profile be interpreted? And who should decide what percentage of a particular ancestry is sufficient for identity claims? Most importantly, however, there is a real danger that the widespread adoption of genetic ancestry tracing will elevate genetics to a position of authority at the expense of other, arguably far more important aspects of identity. Membership in an American ethnic community may have often been tied to genetics, but it has never been solely genetic. For a person to be an "authentic" American Indian or Jew or African-American has never been solely a matter of a person’s physical appearance or blood ties, but of all manner of other cultural forms, from language and history to music and food. If a simple genetic test comes to be seen as a way of adjudicating identity claims, it will threaten to overwhelm all of the other, less easily measurable cultural forms that constitute an identity — such as shared values, languages, history, religion, social institutions, and worldview. Carl Elliott’s research funded by the National Institute of Health, grant R01-HG02196-01 Ethnicity, Citizenship, Family: Identity after the Human Genome Project Susan Parry’s research funded by the University of Minnesota’s Consortium on Law and Values in Health, Environment and the Life Sciences
Notes
    See http://www.familytreeDNA.com/; accessed 12/19/01. See Shelvia Dancy, "Black Heritage: Reclaiming African Ancestry
of Biblical Figures," Plain Dealer, (March 11, 2000): 1F. Sam Fulwood III, "His DNA Promise Doesn’t Deliver; Science: Geneticist Made Headlines Announcing $300 Blood Test That Could Tell African Americans Their Heritage. Fellow Scientists Say It’s Possible, But Not Yet," Los Angeles Times, (May 29, 2000): A1. Greg Wright, "DNA Helps Find African Roots," Enquirer.Com (April 5, 2000); accessed 8/2/01 http://enquirer.com/editions/2000/04/05/ loc_dna_helps_find.html
    See MG Thomas, T Parfitt, DA Weiss, K Skorecki, JF Wilson , M le Roux, N Bradman, DB Goldstein, "Y Chromosomes Traveling South: The Cohen Modal Haplotype and the Origins of the Lemba - the ‘Black Jews of Southern Africa’," American Journal of Human Genetics, Vol 66, No 2, (February 2000): 674-686. See project website at http://www.bioethics.umn.edu/ genetics_and_identity/index.html For more information on genetics and scientific background see "Scientific Background" and "Resources" sections of Genetics and Identity Project website. Indian Reorganization Act of 1934, ch. 576, 48 Stat. 984 (codified as amended at 25 U.S.C. §§ 461-497 (1988)) (Wheeler-Howard Act). See Margo S. Brownell, "Who is an Indian? Searching for an Answer to the Question at the Core of Federal Indian Law," University of Michigan Journal of Law Reform, 34 (Fall 2000/Winter 2001): 275320, 280-282. McMillan, Alex Frew. "Lost Cause: Federal recognition for the Lumbee Indians would have meant as much as $150 million a year for Robeson County. So why didn’t the business community care?" Business, North Carolina Vol 15 (1995): 40-44+, 42. See Beale, Calvin L. "An Overview of the Phenomenon of Mixed Racial Isolates in the United States," American Anthropologist 74 (1972): 704-710 See Padget, Cindy D. "The Lost Indians of the Lost Colony: A Critical Legal Study of the Lumbee Indians of North Carolina." American Indian Law Review 12 (1997): 391. See http://www.lumbeeindians.net/ lumbee_tribal_enrollment.htm; accessed 12/19/01. Tribal membership requires tracing descent from an individual appearing on one of the tribe’s base rolls. Base rolls include Indian School Records, Church Records, and Federal Census Data. Dial, Adolph L. and David K. Eliades. The Only Land I Know: A History of the Lumbee Indians. (Syracuse, NY: Syracuse University Press, 1996), 8. Ibid., 12-13. Ibid., 14-15. Ibid., 16. Ibid., 28. Karen I. Blu. The Lumbee Problem. (New York: Cambridge University Press, 1980), 236. See Stanley G Knick. The Lumbee in Context (New York: Cambridge University Press, 1993), 72 and Gail K. Sheffield. The Arbitrary Indian: The Indian Arts and Crafts Act of 1990. (Norman and London: University of Oklahoma Press, 1997), 116. Blu, 2. Qtd. In Padget, 414.
The Co-Evolution of Bioethics, Computing and Cyberspace: An Archaeological Perspective Robert Baker Union College, Schenectady, NY
The Office as an Archaeological Dig Moving offices is an exercise in autobiographical archeology. I have been a bioethicist since before bioethics came to be called "bioethics" –which was well before the advent of the personal computer. So, although it was only a matter of descending three flights of stairs from a Philosophy office occupied for over a quarter of a century to a newly established Bioethics Center, the materials unearthed in the process document the birth of bioethics and its co-evolution with computing. In this essay I use the "data" revealed by my recent move to explore this co-evolution, touching on the impact of computing and cyberspace on bioethics—including such recent innovations as e- or distance learning and consulting—while reflecting on bioethics’ initial struggles for recognition. The world divides into pilers and filers. I am a habitual piler. The lower levels of some of my piles were clearly demarcated by artifacts of academe BCE—Before the Computer Era—carbons, dittos, and mimeos, notebooks and note cards. The earliest computer era (CE) artifacts in my office are printout sheets from the 1970s—remnants of the period of central computing, when faculty workstations were scarce and printing (for a campus of 2,000 students and 200 faculty) was concentrated at a single campus location. Twelve-inch Displaywriter disks—mementos of two desk encompassing dedicated word processing machines (IBM Displaywriters) that, together with a single printer, were leased to serve the 40 faculty members resident in the Humanities Center in the late 1970s—are the first indicators of "personal computing." My first personal computer was a 1981 Digital Rainbow that actually fit on and under my desk, in my own office and that used diskettes that were merely five inches. The Rainbow has since been replaced by a variety of ever-smaller machines, IBM clones, MacIntoshs and Palms. My current computers—a four-pound Titanium G4, and a four-and-one-half-inch four-point-nine-ounce Palm M-500—have shrunk to notebook and notepad size, and yet even the Palm holds more information than the IBM Displaywriter or the Rainbow. The first artifacts of true cyberspace appear in the early 1990s in the form of Telnet printouts of library catalogues and reference materials. As computing evolved into cyberspace, however, indicative artifacts evaporate into information that is itself stored in cyberspace.
Evolving into a Bioethicist The BCE artifacts relating to early bioethics suggest that recent portrayals of the birth of bioethics fail to capture the initial tenuousness of the enterprise. "Bioethics" is now a secure sub-field of philosophy. Philosophers designate themselves as "bioethicists" in much the same way that might call themselves "epistemologists." Yet, until recently, even my journals eschewed the term. The earliest run of a journal denominating itself "bioethics" that I own is the eponymous Bioethics—a 1986 British publication. Curious, I decided to see whether the eschewal of ‘bioethics’ evident in archaeological record of my office was confirmed by my curriculum vitae. I have been active in the field since 1972, receiving an NEH grant for research in philosophy and medicine in 1974 and attending Sam Gorovitz’s "Institute on Morals and Medicine" in the summer of the same year. My first publication in the field appeared two years later. Yet, with one exception, the term ‘bioethics’ does not appear in the title of any of my articles, or in any book or journal in which they were published, until a 1983 review article for Ethics, entitled "Recent Books in Bioethics." A full decade would pass before I would again use the term in a title. The only BCE artifacts in my office embracing the term ‘bioethics’ emanate from the Kennedy Institute of Ethics at Georgetown University. The term appears in the title of the two editions of the Encyclopedia of Bioethics (1978, 1995), in correspondence related to my contributions to these encyclopedias, in the various editions of Beauchamp and Walters’ Contemporary Issues in Bioethics, and, most commonly, in printouts from BIOETHICSLINE and the Bibliography of Bioethics. Insofar as my office is indicative of the field, it would appear that although some scholars at the Kennedy Institute of Ethics—birthplace of the term and the dominant conception of ‘bioethics’—considered ‘bioethics’ the title of choice for the new field they were attempting to found, neither a typical philosopher working in the field, nor the books and journals in his library, were initially receptive to their conception of the emerging proto-field—until the 1990s. This exercise in autobiographical archeology raises three questions. Why did philosophers eschew the term ‘bioethics’ until the 1990s? Why has ‘bioethics’ become the standard designation for the field? And, finally, to touch on a minor methodological point, if the field first came to be called ‘bioethics’ in the 1990s, can computing be said to co-evolve with "bioethics" prior to bioethics emergence, so to speak? My files/piles suggest some answers. One reason why those involved in bioethics from the beginning were reluctant to use the term was that the legitimacy of our teaching and scholarship depend upon peer acceptance. Yet the documents in my office indicate that my peers in philosophy were initially reluctant to recognize any area of "applied ethics" as properly philosophical—including bioethics. To cite one minor example: in 1972 I listed participation on an American Psychiatric Association panel on psychosurgery in my annual report of professional activities. The Chair of the Philosophy Department where I was teaching asked me to "correct" my report by deleting that line. Displaying the innocent, albeit principled obstinacy of a young academic, I refused. The matter went before a dean, who resolved the issue by surveying philosophy chairs. None of the chairs consulted considered my activity philosophical. In the early days of applied ethics, therefore, a prudent concern for professional survival dictated a strong emphasis on the philosophical nature of one’s work. Philosophy and Sex, which was published three years later, contains ‘philosophy’ in the forefront of its title for precisely this reason. I had deeper reasons for eschewing the label ‘bioethicist.’ The ‘ist’ suffix, with its association with ‘ologies’ and ‘ics’ insinuates a level expertise that made me feel uncomfortable. Archeologists are experts in archeology, biologists in biology, and physicists in physics. Thus to accept the designation ‘bioethicist’ would seem to imply a claim to expertise in bioethics, comparable to biologists’ expertise in biology. Such claims affronted my intellectual heritage. Like most analytic philosophers who came to bioethics in the early days, my teachers held that "ethics" was really metaethics, or, at worst, ethical theory. They disdained ‘normative ethics,’ dismissing it as beyond the bounds of professional philosophy. My ethics teacher, for example, used a very popular ethics textbook that closed with the following thought. Moral philosophy is a practical science; its aim is to answer questions in the form ‘What shall I do?’ [Yet] …no general answer can be given to this type of question… [it] is a dangerous task to undertake…[for] the sort of life that will in fact be satisfactory to a man will depend on the sort of man that he is…. The questions ‘What shall I do?’ and ‘What moral principles should I adopt?’ must be answered by each man for himself; that at least is part of the connotation of the word ‘moral’. Bioethics, of course, is precisely the attempt to address the questions "what shall [clinicians/biomedical researchers] do?" Yet, even as I rejected the notion that it was part of the meaning of ‘moral’ that each person, clinician or researcher, should decide such questions for her/himself, my teachers’ intellectual prejudices lingered. Only in the 1990s—after two decades of work in clinical contexts—did I become comfortable with the ‘ist’ suffix and its implications of expertise. I found, moreover, that my knowledge of clinical and professional ethics extends well beyond that of a (dare I say "mere") metaethicist or an ethical theorist. They are comparatively untutored in the languages of the clinic and the biomedical sciences; the intricacies of professional codes of ethics often elude them, as do the roles and unwritten rules of the clinic and the laboratory. Not surprisingly, therefore, although their presentations on the ethical aspects of biomedicine sometimes display the virtues of talented amateurs, more often than not they just seem amateurish. Yet, if I consider them amateurs, I could not object to designations implying my expertise. In the 1990s my reservations about the designation ‘bioethicist’ vanished. Other philosophers must have undergone a similar transformation. Until the mid-1980s the term ‘bioethics’ was notably absent from the names and the publications of the major societies in the field: the American Society of Law, Medicine and Ethics (founded by physicians and lawyers in 1911) and The Society for Health and Human Values (SHHV, founded by physicians and theologians working in medical contexts in 1969). By the 1980s, however, philosophers began to play an active role in professional societies. They played a leading role in founding the Society for Bioethics Consultation (SBC) in 1985, and the American Association of Bioethics (AAB) about a decade later. In 1998, the (approximately) 600member AAB, and the 150-member SBC, banded together with the 850-member SHHV, to form the 1500-member American Society for Bioethics and Humanities (which now has almost 2,000 members)—making ‘bioethics’ the official name for the field. Organizations founded by philosophers thus catalyzed the move to denominate the field ‘bioethics.’ Perhaps not surprisingly, during this period, philosophically oriented discourse systematically displaced the more theologically oriented ‘human values’ language of theology and medical humanism. In short, as "bioethics" became more philosophical, philosophers became more willing to accept the designation ‘bioethicist,’ and—to return to autobiographical archeology—the books, journals and other artifacts unearthed in my office "dig" reflect that transformation. Now to the methodological issue: if philosophers are newly minted "bioethicists" who did not accept the designation until the 1990s, is it reasonable to discuss the coevolution of computing and bioethics in earlier periods? As it happens, the language of evolution is Whiggishly teleological. The evolution of homo sapiens, for example, includes our non-human precursors. So, if one takes care to recognize the evolving nature of both computing and philosophers’ changing attitudes towards ascriptions of expertise, the term ‘bioethics’ can be applied to earlier proto-bioethical decades. The Impact of Computers and Cyberspace on Bioethics Publishing and Research Judging from the evidence offered by the various strata in my office, computers and cyberspace had the same impact on the field that was to become bioethics as it did on the rest of academia. Lower strata bear witness to the incessant struggle with the fixity of the physical page that defined and plagued academia in the pre-computing era—cutting, pasting, stapling, multiple pre-publication galley and page proofs, prolonged correspondence over edits, and so forth. Word processing liberated writing from the fixity of the physical. Cutting and pasting were soon supplanted by metaphorically analogous computer operations, freeing writers from a bondage that had been made invisible by its universality. The page vanished and we could focus on the text. Word processing freed some of us from other limitations. Spell check, for example, meant that poor spellers, like me, could now circulate our roughest drafts with confidence. From an editor’s perspective, however, e-mail—especially the ‘attach file’—was almost as important as word processing itself. The physicality of the page and the slowness of the post held editorial processes to a snail’s pace, leaving a longish paper trail in its wake. Editorial correspondence and related materials for the first edition of Philosophy and Sex (1975) filled a small filing cabinet. By contrast, materials relating to the latest edition (1998)—a text 2/3 larger—fills only a few folders, the rest is on my laptop computer’s hard drive. The editorial preparation process itself was reduced from three years to a bit over one. This transformation occurred relatively recently. Most of the texts for the four volumes that I edited or co-edited between 1990 and 1995 were transmitted via intermediate technologies: diskettes mailed through the post supplemented by phone, fax and email. After 1995, however, e-mailed files became the primary means for transmitting manuscripts. Virtually all of the chapters commissioned for The American Medical Ethics Revolution (1999) were sent by e-mail as attached files. Similarly, the 67 commissioned chapters in the book that I am currently coediting, a Cambridge History of Medical Ethics, are being submitted as attached files. The diskette, once the epitome of progress, is now so obsolete that many computers no longer have disk drives. The result of this transformation is that complex volumes can now be edited expeditiously and less expensively. Yet, ironically, as the acceleration of the process becomes commonplace it is taken for granted, and what once seemed rapid in editing now feels like a delayed response. Cyberspace has some real limitations. Although I share editorial comments via cyberspace with my co-editor for A History of Medical Ethics, Laurence McCullough of the Baylor College of Medicine, we still meet in person on a regular basis and we are in constant phone communication. We also launched the histor y project and our more recent collaboration, the Cambridge Dictionary of Bioethics, the old fashioned way—via conferences in Houston and Schenectady at which contributors and editors met face to face, in the flesh, to explore new ideas in non-virtual reality. Nonetheless, meeting fellow scholars in non-virtual reality is time consuming and expensive (the launching conferences would have been impossible without generous funding from such organizations as the Greenwall Foundation and the National Endowment for the Humanities); I wonder whether our need for personal contact is not a psychological limitation of mature scholars—like Larr y and me—whose expectations and scholarly habits are rooted in the pre-computer past. For the present, however, I cannot envision launching projects at this level of complexity entirely in cyberspace. Person-to-person non-virtual interaction and cross-fertilization seem essential— perhaps even efficient. Larry and I are exploring even newer ways in which bioethicists can collaborate on complex scholarly works via cyberspace. The editorial process for the Cambridge Dictionary of Bioethics is a case in point. The Dictionary will be a 600,000-word, 750-page, global dictionary of bioethics, involving an editorial board of over 50 bioethicists and hundreds of contributors (who will eventually be invited to contribute via e-mail). Our aim is to produce a comprehensive but concise one-volume international dictionary. The project is challenging both because of its international scope and because bioethical language is as rooted in the informal argots, the "shop talk," of the laboratory and the wards, as it is in the formal discourses of medicine, law, theology, and philosophy. Thus, in addition to definitions of the biological medical, legal, theological and philosophical terms used in standard bioethical discourse, the Dictionary will include acronyms and informal usages. Our headword list (i.e., the list of terms to be defined) will range from ‘ARESLD’ to ‘xenograft’, from ‘clone’ to ‘GMO’; from ‘euthanasia, human’ to ‘euthanasia, non-human animals’; from ‘circumcision, female’ and ‘circumcision, male’ to ‘gomer,’ ‘gork,’ ‘tipping; ("parasolvency ") and ‘virginity testing’. Embracing the internationalism of contemporary bioethics, the Dictionary will include English versions of the discourse of the EU as well as the US, of the UN and WHO as well as NIH and NSF, and of European as well as North American philosophy—containing headword entries for ‘solidarity’ as well as ‘autonomy’.(See APPENDIX 1) Meeting the three great challenges of dictionary creation expeditiously would have been impossible outside of cyberspace. Dictionaries require a headword list—and thus a method for determining which terms will be included or excluded from the headword list— a panel of experts to define the headwords, and a vetting process to check the accuracy of the definitions. Since there is no precedent for a comprehensive international dictionary in bioethics, had we pursued this project by traditional means, completion would take at least a decade, probably longer. Given the pace of bioethical innovation, the volume would be doomed to obsolescence before its publication date. Yet, by scanning newsletters, journal abstracts and indices we were able to generate a sample of bioethical discourse in under a year; combining this raw data with a new dictionar y-editing software that we are developing for our purposes, we should be able to engage hundreds of bioethicists in a collaborative process of selecting, defining and editing the hundreds of entries in the comparatively short period of a few years. By drawing on the collaborative possibilities inherent in cyberspace we will thus be able to publish the Dictionary before it becomes obsolete—presumably a minimal condition for its success. Cyberspace, or, more accurately, a website devoted to the Language of Bioethics, will also enable bioethicists to report new usages to us, allowing us to make updated list of definitions available to the international bioethics community in a timely manner.
Problems in Cyberspace Having lauded the virtues of computers and cyberspace, I want to underline some problems: the instability of cyberspace and computer media, technological obsolescence, and our collective dependency on government maintained databases. Cyberspace and computer technology are in perpetual revolution and revolutions, by nature, are unstable and destructive. The fixity of paper and print, vexatious though they may be during the process of creation, becomes a singular virtue in matters of preservation. As the piles and files in my office demonstrate, typescripts, printed pages, books, even hand written manuscripts, are inherently stable media whereas, to reiterate, cyberspace is not. Computer problems (often virus induced) plagued both editors and many authors throughout the editing of A History of Medical Ethics. Assuming a modicum of probity in editorial communications, a surprisingly large number of contributors still lose material on their computers or in cyberspace— frequently without the protective redundancy of "back ups." Viruses are also an on-going threat to the Dictionary, and, despite multiple precautions, I have nightmares about a cleverly dormant virus or a worm undoing weeks, perhaps even years of work. Free use of cyberspace, like freedom everywhere, requires eternal vigilance in protecting it Computer dependency is also problematic because of the rapid obsolescence of computer technologies. An unkind intersection of human frailty and bureaucratic procedure, for example, led to the destruction of thousands of hours of notes on ICU decision-making that I had collected during the 1980’s. They had been stored on mainframe computer tal\pes, and destroyed during the college’s conversion from a Hewlett packard to a Digital VAX cluster. (It happened when I was away on sabbatical and so I never filled out the requisite form.) Computer technology is constantly being up-graded, and data texts not transferred from older media to newer quickly become inaccessible. When the last diskette drive becomes a museum piece, whatever has not been transferred to the storage medium of the moment will become inaccessible and will degrade from information to artifact. On a somewhat deeper layer, in the late 1970’s, Andre Hellegers, the inspirational force behind the Kennedy Institute of Ethics, urged LeRoy Walters and others at the Institute to work with the National Librar y of Medicine to create a research tool for the nascent field