Bioethics Handouts, Tim Lewens 13

BIOETHICS: GENES, HEALTH AND AUTONOMY

Bioethics: Genes, Health and Autonomy Tim Lewens, Lent 2013 (HPS Pt II, Paper 7, Ethics and Politics of Science) Suggested reading (Items marked with a * will be kept on reserve in the Whipple Library.) In general, the most useful books that are specific to this course are:

*Buchanan, A. et al (2000) From Chance to Choice: Genetics and Justice. Cambridge: CUP. *O’Neill, O. (2002) Autonomy and Trust in Bioethics. Cambridge: CUP.

For polemical dissent from the mainstream try:

Elliott, C. (1999) Bioethics, Culture and Identity. A Philosophical Disease. Routledge. Enthusiasts may find these texts useful for general background to ethical theory and political philosophy:

Rachels, J. ed: (1998) Ethical Theory (vols 1&2) Kymlicka, W. (2002) Contemporary Political Philosophy 2nd ed. (OUP) Williams, B. (1976) Morality (CUP) Kagan, S. (1997) Normative Ethics (Westview)

Specific Topics The following look more closely at topics covered in this course. Further readings will be suggested in the lectures. Genetic Testing:

Buchanan, A. et al (2000) From Chance to Choice: Genetics and Justice. Cambridge: CUP. (Chapter Two) Glover, J. (2000) ‘Future People, Disability and Screening’ in Harris (ed.) Bioethics. OUP. Paul, D. (1999) ‘What is a genetic test, and why does it matter?’ Endeavour 23(4): 159-161.

Genetic Exceptionalism:

Richards, MPM (2001) ‘How Distinctive is Genetic Information?’ Studies in History and Philosophy of Biological and Biomedical Sciences 32: 663-688. Lewens, T (2002) ‘Development Aid: On Ontogeny and Ethics’ Studies in History and Philosophy of Biological and Biomedical Sciences 33: 195-217.

Health:

*Humber and Almeder (eds.) (1997) What is Disease? Humana Press. See especially paper by Boorse.

TIM LEWENS, LENT 2013 EMAIL: [email protected]


Amundson, R. (2000) ‘Against Normal Function’ Studies in History and Philosophy of Biological and Biomedical Sciences 31: 33-53. Cooper, R. (2002) ‘Disease’ Studies in History and Philosophy of Biological and Biomedical Sciences 33: 263-282.

Treatment and Enhancement:

Sandel M. (2007) The Case Against Perfection: Ethics in the Age of Genetic Engineering. Cambridge, MA: Harvard University Press. Parens. E. ed. (2000) Enhancing Human Traits (Georgetown UP) *Kitcher, P. (1996) The Lives to Come. Penguin. Chapter 8. *Buchanan et al (2000) From Chance to Choice. CUP. Chapter 4.



Lecture One: Genetic Testing 1. Hopes

• Prevention of hereditary diseases by pre-natal screening, or pre-implantation screening. • Psychological preparation for the onset of a hereditary disease. • Confirmation that one is unlikely to get a disease that runs in the family. • Early identification of genetic susceptibility to disease, and management of one’s lifestyle

to minimise consequent risk. 2. Fears

• ‘Genetic discrimination’: denial of employment, life insurance, or health insurance to individuals with ‘the wrong genes’

• A new eugenics: preoccupation with making sure that only individuals with good genes are allowed to reproduce, thereby ensuring that only ‘perfect people’ exist in the future.

3. Three lessons from PKU testing

• Genetic Determinism is flawed • Genetic tests are not easily defined—this suggests we should not be ‘genetic

exceptionalists’ • The importance of ‘molecular medicine’ should not be exaggerated

4. Genetic Testing and Eugenics

• Genetic testing sometimes reflects an effort to control the makeup of future generations. (e.g. pre-natal screening)

• Nazi eugenic practices also had this aim. Does this make genetic testing objectionable?

Not by itself: if Y is wrong, and X is similar to Y, then that doesn’t show X is wrong. Some apparently salient differences between then and now: the absence of coercion, screening out only diseases Problem: it isn’t only genetic testing that has the aim of affecting the makeup of future generations. Consider also:

• Folic acid supplements for women contemplating pregancy and the prevention of neural tube defects

• Public health and eugenics in Brazil Moral: genetic testing is not the only area in which parallels with eugenics can be drawn. Further reading Paul, D. (1998) ‘PKU Screening: Competing Agendas, Diverging Stories’ The Politics of Heredity. SUNY. Paul, D. (1999) ‘What is a genetic test, and why does it matter?’ Endeavour 23(4): 159-161. Paul, D. (1998) ‘Is Human Genetics Disguised Eugenics?’ in Hull and Ruse (eds.) The Philosophy of

Biology. OUP. Glover, J. (2001) ‘Future People, Disability, and Screening’ in J. Harris (ed.) Bioethics. OUP. Lewens, T. (2004) ‘What is Genethics?’ Journal of Medical Ethics 30: 326-328. Brock, D., Buchanan, A., Daniels, N. and Wikler, D. (2000) From Chance to Choice. CUP. Chapter Two. Stepan N. (1991) ‘The Hour of Eugenics’: Race, Gender and Nation in Latin America. Ithaca: Cornell

University Press. Kevles D. (1985) In the Name of Eugenics. Berkeley and Los Angeles: University of California Press.



Lecture Two: Genetic Exceptionalism 1. Are genes special? Public concern with new developments in reproductive and other genetic technologies might seem to presuppose some special set of powers of genes that explain this elevated concern. When we thinking of bioethics we think of problems posed by human cloning, the alteration of human traits through genetic engineering, the selection of human traits through genetic screening, and discrimination made possible by genetic testing. This is further exacerbated by: • Reporting on the human genome project • Other media representations of possible genetic futures. 2. Genetic causes and genetic data The term ‘genetic exceptionalism’ has been used to mark a view about genetic data. Think of genetic data as information about genes. (Note this can be confusing, as some ‘informational’ talk in biology suggests that genes are a form of information—genes are spoken of as ‘code’, ‘blueprints’, ‘information for building an organism’) So the question for bioethics is whether genetic data have importantly different properties from other kinds of data. 3. What makes data genetic? This is not a trivial problem. Many genetic tests do not, in fact, look directly at DNA sequence, but instead at some protein normally produced by some DNA sequence. Do these tests give us genetic data? If we say yes, then we risk making ‘genetic data’ too permissive. We can infer information about DNA sequence from all kinds of physical features. 4. Two types of genetic data • Interpreted data: sequence information with links to likely effects • Uninterpreted data: raw sequence information alone, including ‘non-coding’ sequence

information. Without interpretation, or the likelihood of interpretation, uses of genetic data are primarily restricted to identifying individuals and family relationships. 5. Distinguishing marks of genetic data • Prediction: genetic data reveal an individual’s likely future • Familial nature: genetic data do not apply solely to an individual, but allow inferences

about relatives. • Personal nature: genetic data display the unique code underlying an individual, hence

they are uniquely personal. • Identifying nature: genetic data enable the identification of an individual from

discarded tissue samples. 6. Case study: Genetic tests and insurance



Genetic tests might lead to premiums being set very highly for those with certain genetic conditions. Is this unfair discrimination?

No: Those who present higher risks should cover those risks (consider high premiums for smokers, or higher travel insurance premiums on winter sports) Yes: Individuals cannot control their genes. (But contrast with car insurance.)

7. Two models for insurance: mutuality and solidarity

Solidarity: Example—the NHS. These modes of social insurance cover everybody for a defined range of risks: nobody is excluded because they are deemed to be a poor risk. Insurance based on solidarity is typically compulsory; premiums are set either equally or according to ability to pay and there is no direct relationship between an individual's contribution and the benefit that they may be expected to draw. Mutuality: Example—most commercial insurance (life insurance, house contents insurance, etc.). Here purchase is optional, and a proposal may be refused, or the premium increased, if the risk is judged higher than normal. Insurers therefore exercise discretion in setting premiums, which are based on an individual's perceived risk at the time of purchase. Those with similar perceived risk are assigned to the same ‘pool’ and charged the same premium for a given level of cover; claimants are paid according to their loss or the sum assured.

8. The case for making genetic tests available to insurers:

In the case of mutuality, the practice of insurance is typically said to rely on the ‘utmost good faith’ (uberrima fides) of both parties. The applicant for insurance needs to disclose relevant information, in order to be placed in the right risk pool. Hence failure to disclose genetic test results violates trust on the part of the applicant for insurance, and can potentially lead to unfair premiums for others as a consequence of ‘adverse selection’.

9. The perspective of insurance companies Commercial insurers have underlined their wish (endorsed by GAIC [Genetics and Insurance Committee], and restated since GAIC was wound up in 2009) to uphold the general principle of informational symmetry. However, they have been willing to tolerate a temporary relaxation of this principle, because as a matter of fact, the number of policies affected by non-disclosure of genetic test results is very small, hence risks of elevated payout costs (and subsequent transfer of these costs to other pool members) are low. Since 2001 a moratorium has existed (initially extended to November 2011, now extended again to 2017, due for review in 2014), which allows non-disclosure of predictive genetic test results unless two conditions are satisfied:



• Life insurance policies must have a value over £500,000 • The test in question must be approved by Government as reliable and relevant. At

present, only Huntington’s Disease tests have been approved (and they were approved in 2000).

10. Insurance and justice Note, however that the current moratorium dodges some deeper issues related to ethics and justice. If we retain the principle of mutuality, and with it the requirement of disclosure, then nothing rules out the requirement for people to disclose genetic test results so long as the information they give is of actuarial relevance. If powerful genetic tests become available that give information about likely future medical conditions, then mutuality demands that premiums increase. What would be wrong with this? In many cases we are happy for people to pay higher insurance premiums in virtue of higher risk. But access to life-insurance can play an important role in accessing basic goods—it is essential if one is to get a mortgage, for example. So does this entail an argument for genetic exceptionalism after all? Should insurers be prevented from accessing genetic test results on grounds of justice? No. The issue that is raised is a generic one regarding the status of those forms of insurance that are required in order to access basic goods. Many people think that health insurance needs to be organised along principles of solidarity. The point here is not that we think genetic information should be withheld from the determination of health insurance premiums, while other information (regarding family history, diagnostic testing and so forth) should be disclosed for the purposes of setting premiums. The point is that we regard a mutuality model as unjust, in virtue of the importance of health. Perhaps life insurance will need to be re-organised along these lines, too. Further reading: Murray, T. (1997) ‘Genetic Exceptionalism and “Future Diaries”: Is Genetics Different from

other Medical Information?’ in Rothstein (ed.) Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. Yale.

Richards, M. (2001) ‘How Distinctive is Genetic Information?’ Studies in History and Philosophy of Biological and Biomedical Sciences 32: 663-687.

Rothstein, M., ed. (2004) Genetics and Life Insurance. Cambridge, MA: MIT Press. Holm. S. (1997) ‘There is Nothing Special about Genetic Information’ in Thompson and

Chadwick, eds. Genetic Information. New York: Academic. O’Neill, O. (2002) Autonomy and Trust in Bioethics. CUP. Chapter 5. Sorell, T. (2002) ‘The Insurance Market and Discriminatory Practices’ in Burley and Harris, eds.

A Companion to Genethics. Blackwell. O’Neill, M. (2006) ‘Genetic Information, Life Insurance and Social Justice’, The Monist, 89: 4 Concordat and Moratorium on Genetics and Insurance: http://www.dh.gov.uk/health/files/2012/06/Concordat-and-Moratorium-on-Genetics-and-Insurance-20111.pdf



Lecture Three: Health 1. Why define health?

• If we think the function of medicine is to treat disease, then it is important to know what disease is.

• Some take the line between health and disease to mark an important ethical boundary—either in terms of what treatments individuals should be entitled to, or what interventions parents should be prevented from undertaking.

• For others, a critical account of the social status of disease can lead to further political points about disability rights (Amundson, Silvers)

2. Naturalism about health In all cases, naturalistic theories think of the disease status of a trait as a matter settled wholly by facts of biology. Such theories are usually contrasted with normative theories, that think of disease in terms of ‘badness’, ‘discomfort’, ‘impairment of goals’ or some such. Consider the example of the WHO definition: ‘Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.’ 3. Boorse’s biostatistical model.

Disease is adverse departure from statistically normal function. The function of a trait is its contribution to survival and reproduction.

Note: this is not the only naturalism. One could adopt an evolutionary model of proper function.

4. Objections to Boorse

• The problem of ‘reference classes’ • Too many diseases? Left handers, cosmetic norms, homosexuality • Too few diseases? Sociopathy

5. General objections to naturalism

• Disease status changes over time (masturbation, ‘drapetomania’, homosexuality) 6. Alternative theories: normativism

• Problems in contrast: naturalism leaves room for a good deal of ‘construction’ • The important question is what we can use a theory of health for.

Further reading Boorse, C. (1977) ‘Health as a Theoretical Concept’ Philosophy of Science 44: 542-573. Boorse, C. (1975) ‘On the Distinction Between Disease and Illness’ Philosophy and Public

Affairs 5: 49-68. Amundson (2000) ‘Against Normal Function’ Studies in History and Philosophy of Biological

and Biomedical Sciences 31: 33-53. Kingma, E. (2007) ‘What is it to be healthy?’ Analysis 67: 128-133. Papers in Humber and Almeder eds. (1997) What is Disease? Humana Press.



Lecture Four: Treatment and Enhancement 1. Human enhancement ‘Human enhancement’ is a blanket term that typically refers to a variety of efforts that are intended to boost our mental and physical capacities, and the capacities of our children, beyond the strict demands of good health (perhaps substantially beyond the normal upper range found in our species). Two roles for treatment and enhancement

• What forms of medical care should we all be entitled to? • In what ways can parents justifiably alter the makeup of their children?

2. The varieties of enhancement Enhancement can take many forms; moreover, it is hard to argue that enhancement is novel. This supplies a prima-facie case for thinking there is no generic ethical significance attached to the treatment/enhancement divide. (Consider, for example, the case of vaccination (Harris 2007).) 3. Arguments against enhancement

I) Maybe enhancements are likely to harm the child, while treatments are likely to do good. This is not clear on Boorse’s view of disease:

a) Not all Boorsean diseases need be harmful to the bearer (homosexuality) b) It is not clear that (e.g.) moderately increased intelligence need be harmful

II) Maybe enhancements limit the child’s autonomy, while treatments promote autonomy. III) Maybe enhancements impose unreasonable expectations on the child. IV) Perhaps broader issues relating to justice lie at the heart of these debates: a concern to avoid social arms-races.

4. The case of Sandel

Michael Sandel’s case relies on what he sees as the importance of the ‘giftedness’ of human nature:

“To appreciate children as gifts is to accept them as they come, not as objects of our design, or products of our will, or instruments of our ambition. Parental love is not contingent on the talents and attributes the child happens to have…[W]e do not choose our children. Their qualities are unpredictable, and even the most conscientious parents cannot be held wholly responsible for the kind of child they have. That is why parenthood, more than other human relationships, teaches what the theologian William F. May calls an ‘openness to the unbidden’.”




Some responses to Sandel: • Unconditional love—one sense of ‘openness to the unbidden’—is consistent

with trying to make one’s child’s life go as well as possible. • Refusing to intervene in what nature bestows—another sense of ‘openness to

the unbidden’—seems ethically problematic. In neither case is enhancement in general ethically dubious. Sandel’s response:

“To appreciate children as gifts or blessings is not to be passive in the face of an illness or disease. Healing a sick or injured child does not override her natural capacities but permits them to flourish.” But how are we to draw this distinction between ‘overriding’ natural capacities, and permitting them to flourish? Cf the PKU case.

5. Procrustean parenting

Suggestion: Sandel perhaps succeeds in diagnosing what is wrong with many uses of enhancements—they are insensitive to the interests of the child. This does not show an ethical difference between treatment and enhancement: some enhancements may be in tune with the child’s interests, and some treatments may be in conflict with the child’s interests. Further reading: Parens, E. (1998) Enhancing Human Traits. Georgetown University Press. See especially

chapters by Silvers, Brock, Parens. Kitcher (1996) The Lives to Come. Penguin. Ch. 8. Feinberg, J. (1992) ‘The Child’s Right to an Open Future’ in Freedom and Fulfillment:

Philosophical Essays. Princeton University Press. Harris J. Enhancing Evolution: The Ethical Case for Making Better People. Princeton,

NJ: Princeton University Press 2007. Sandel M. The Case Against Perfection: Ethics in the Age of Genetic Engineering.

Cambridge, MA: Harvard University Press 2007.

Bioethics Handouts, Tim Lewens 13

Documents

Transcript of Bioethics Handouts, Tim Lewens 13