oxford handbook of bioethics

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We commented earlier that the UK’s Nuffield Council on Bioethics, in its report on the ethical and legal issues surrounding human tissue, argued that, providing there were no adverse consequences for the patient, consent to remove a tissue for therapeutic reasons implied consent to any subsequent ethical use of the tissue. The rise of individual autonomy as the prime moral good in bioethics, combined with decreasing expectations of social responsibility and the organ retention scandals, mean that this presumption is no longer the case (Furness 2003). The position autonomy demands now is that the patient should have control over the use to which their excised tissue or blood is put. But it has been pointed out that patients who have given informed consent to their tissue being used for research or teaching should not have these wishes overridden by research ethics committees (Furness 2003).

There is confusion caused by the tension between patient as arbiter of their tissue samples and the need for good access and availability of tissue samples. Much of the tension is between researchers and the research ethics committees that are required to approve their proposals. There are guidelines and mechanisms in place to permit research where consent is difficult to obtain — for example, in cases where the patients are unable to be contacted (Medical Research Council 2001). But the primacy of patient autonomy perceived by many research ethics committees has resulted in the ignoring of such mechanisms and guidelines. This confusion extends to the researchers themselves, with many imposing restrictions on their own work by ‘an unnecessary commitment to exclude samples from patients who had died or were lost to follow up’ (Furness 2003: 39).

That research in the United Kingdom has been damaged in the wake of organ retention scandals is not in doubt. It created a substantial reduction in the numbers of post mortems undertaken with the consent of relatives. The effect of this is an increasing difficulty in obtaining tissue samples (Underwood 2001). The decrease has been unnecessary as many of the parents of children who died have spoken of their willingness to donate organs for use in research if only they had been asked.

THE NATURE OF GENET IC INFOR MAT I ON

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These ideological positions undercut the social purpose and requirement of human tissue archiving. The very nature of genetic information is a denial of our individuality and separateness. In fact, it is about how very similar we are and in itself displays the connections and responsibilities we hold to others. All threats to privacy and non-discrimination can be secured against by the appropriate legislation. In fact when polls have been taken determining the public reaction to the holding, by anyone, of genetic information, there are very strong Rawlsian ‘veil of ignorance’ responses made. These intuitions of what would be just — i.e. no discrimination

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on top of being unlucky in the genetic lottery — are fairly unanimous. They should be used to make the foundation of appropriate legislative conditions under which altruism can flourish without penalty. It should also be borne in mind that demands for individual property rights come from persons who, like all of us, have been advantaged by past medical discoveries. Why they should think it appropriate that such benefits should not be extended to future generations is indicative of the mean-spirited nature of much individualistic thought.

There should be no genetic exceptionalism — it is medical information like any other — and can be accommodated by appropriate moral principles and concepts. The very same familial consequences cause alarm should also remind us of our deep connection and therefore our responsibilities to each other. Personal genetic information, rather than being something detrimental or alarming, is actually beneficial for all of us. The sharing of genetic information within families can help people avoid serious illness. To be informed of one’s susceptibility to a genetic disorder may permit a therapeutic intervention or allow the individual to make lifestyle changes in order to lessen the possibility of contracting a disease or disorder. But, the main importance of research in genetics is the resulting therapeutic advances gained from such research. As this benefits all individuals, we perceive there to be a corresponding responsibility by individuals to continue with altruistic participation.

When this question was raised most recently in the United Kingdom, it fell to the Human Genetics Commission to consider the implications of genetic information. Their consultation document ‘Inside Information’ canvassed public attitudes to personal genetic information and how it should be treated (Human Genetics Commission 2002). They concluded that there was strong public support for research into human genetics and the benefits it is expected to bring. It was widely held that public, rather than private, ownership of genetic knowledge is preferable, and the majority of people believe in the central role of consent for the obtaining and storing of genetic information. There was considerable opposition to the use of genetic information by insurance companies or employers. The Commission concluded that the public do not wish to see people disadvantaged by their genetic characteristics.

We believe that genetic knowledge and the nature of genetic information creates a moral relationship between people. Concepts and moral principles have been proposed to give guidance to all parties in regard to genetics. The Human Genetics Commission has proposed the concepts of genetic solidarity and altruism that promote the common good. It states that

We all share the same basic human genome, although there are individual variations which distinguish us from other people. Most of our genetic characteristics will be present in others. This sharing of our genetic constitution not only gives rise to opportunities to help others but also highlights our common interest in the fruits of medically-based genetic research. (Human Genetics Commission 2002: 2.11)

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As virtually all medical facts have a genetic component, genetic information should have the same robust protections that exist for all medical information.

Finally, it may be that the fears surrounding the new type of biobanking is actually less of a threat to individual privacy. The goal of large-scale tissue banks is to predict the risk of disease in populations and subgroups rather than individuals.

HOW TO PRO CE E D

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The need to continue tissue archiving is paramount. Korn writes that advances in therapeutics, diagnostics, and understanding do not obviate the need for the continuation of tissue archiving and research. The most striking example of the need for this is to be seen in respect to the central nervous system and neuromuscular disorders. This is for several reasons. There are still no tissue culture or animal models accurate enough to supply parallels to the human brain. Also the most effective way of trying to determine the aetiology and pathogenesis of the brain is still based on the ‘meticulous investigation of human tissue samples in correlation with equally meticulous clinical evaluation of patients over relatively long periods of time’ (Korn 1998: 17). As with the chance discoveries we noted at the start of this chapter, the application of new technologies or invention to the study of neurological and central nervous system disorders is completely dependent on the existing tissue archives to make the necessary experiments.

Good concepts and moral principles are available to us to take us into a new era of preventative medicine. Furthermore, personal genetic information may or may not be significant for the individuals involved, therefore a ‘one size fits all approach’, such as property rights in tissue, is inappropriate. There is no reason for genetic information, in itself, to be treated as being particularly sensitive. Historically and culturally, it is understood that medical information is confidential. Medical information with a genetic component is not different. In both cases the information has the potential to disclose a patient’s vulnerability.

Appropriate principles can be used to enlighten the frameworks for biobanking and the utilization of genetic information. Principles of respect for persons affirm the ‘equal value, dignity and moral rights of each individual. Each individual is entitled to lead a life in which genetic characteristics will not be the basis of unjust discrimination or unfair or inhuman treatment’ (Human Genetics Commission 2002: 2.20). This reflects the instincts and intuitions received from polls of public opinion.

The principles identified as appropriate for guiding legislative and other frameworks are still concerned with safeguarding individuals — as they should be. Other secondary principles advocated by the Human Genetics Commission include the principle of privacy, the principle of consent, the principle of confidentiality, and the

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principle of non-discrimination. Instead of a persistent debate about the individual versus society, the nature of genetics and medical progress require individuals to be seen, and to see themselves, as members of a society with shared interests in the improvement of health.

CONCLUSION

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When we consider the history of tissue archiving and appreciate the great gains it has brought individuals and society, we should appreciate that removing tissue samples for research and archive was done so under sparing consent language. We cannot foresee what research ideas will spring from the elegant ideas, inspiration, lateral thinking, or observations of medical researchers. Tissue archiving must remain a ‘rich, unique, irreplaceable, and virtually indestructible’ resource (Korn 1998: 41). Our fears of threats to the privacy and fair treatment of individuals must be tempered by our experience of the great good of medical research, which seeks to improve the lives of mankind as a whole. Medical information that is genetic in nature is neither necessarily nor fundamentally different, in itself. Vigilance and appropriate legislation can safeguard individuals. The thorny problems that arise from the obligations engendered by familial connections are an addition to the bioethical canon of problems to be dealt with through robust debate.

THE OBLIGAT ION TO UNDERTAKE RESEARCH

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Finally, it must be emphasized that we, all humankind and all societies, have the strongest of obligations to pursue promising therapeutic research and that to fail to pursue research that might save these and many other lives would be both tragic and truly immoral. Two separate but complementary lines of argument lead to this conclusion. First, it follows from one of the most powerful obligations that we have, the obligation not to harm others. Where our actions will probably prevent serious harm, then if we reasonably can (given the balance of risk and burden to ourselves and benefit to others), we clearly should act because to fail to do so is to accept responsibility for the harm that will then occur (Harris 1980). This is the strong side of a somewhat weaker but still powerful duty of beneficence, our basic moral obligation to help other people. Most, if not all, diseases create unmet needs in those who are affected, and because medical research is often a necessary component of relieving those needs, furthering medical research becomes a moral obligation.

We all benefit from living in a society, and indeed in a world, in which serious scientific research is carried out and which utilizes the benefits of past research. It

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is both of benefit to patients and research subjects and in their interests to be in a society that pursues and actively accepts the benefits of research and where research and its fruits are given a high priority. We all also benefit from the knowledge that research is ongoing into diseases or conditions from which we do not currently suffer but to which we may succumb. It makes us feel more secure and gives us hope for the future, for ourselves and our descendants, and others for whom we care. If this is right, then we all have a strong general interest that there be research, and in all well-founded research. The human tissue archive in the past, and biobanking in the future, together constitute one of the most powerful research tools available to humankind. To turn our backs on the research that might save so many lives is literally to acquiesce to participation in the sacrifice of those lives.

REFERENCES

BENNETT, R. (2001), ‘Antenatal Genetic Testing and the Right to Remain in Ignorance’,

Theoretical Medicine and Bioethics, 22/5: 461 – 71.

BURLEY, J. (1999), ‘Bad Genetic Luck and Health Insurance’, in J. Burley (ed.), The Genetic Revolution and Human Rights (Oxford: Oxford University Press), 54 – 60.

DICKSON, D. (2002), ‘Human Tissue Samples More Difficult to Obtain for Academics’,

Nature Medicine, 8/6: 543.

ERIN, C. (1994), ‘Who Owns Mo? Using Historical Entitlement Theory to Decide the Ownership of Human Derived Cell Lines’, in A. O. Dyson and J. Harris (eds.), Ethics and Biotechnology (London: Routledge), 157 – 78.

FURNESS, P. N. (2003), ‘Use and Abuse of Consent’, Bulletin of the Royal College of Pathologists, 123 ( July 2003), 38 – 9.

GOLD, R. E. (1988), Body Parts: Property Rights and the Ownership of Human Biological Materials (Washington: Georgetown University Press).

GOSDEN, C., OLSEN, D., et al. (2003), Medicine Man: The Forgotten Museum of Henry Wellcome (London: British Museum Press).

HARRIS, J. (1980), Violence and Responsibility (London: Routledge & Kegan Paul).

(2002), ‘Law and Regulation of Retained Organs: The Ethical Issues’, Legal Studies, 22/4: 527 – 49.

and KEYWOOD, K. (2001), ‘Ignorance, Information and Autonomy’, Theoretical Medicine and Bioethics, 22/5 (Sept.), 415 – 36.

HOLM, S. (2001), ‘The Privacy of Tutankhamen: Utilizing the Genetic Information in Stored Tissue Samples’, Theoretical Medicine, 22: 437 – 49.

HUMAN GENETICS COMMISSION (2002), ‘Inside Information: Balancing Interests in the Use of Personal Genetic Data’, <http://www.hgc.gov.uk/UploadDocs/DocPub/Document/ insideinformation summary.pdf>.

KNOPPERS, B. M. (1999), ‘Who Should Have Access to Genetic Information’, in J. Burley (ed.), The Genetic Revolution and Human Rights (Oxford: Oxford University Press), 39 – 53.

KORN, D. (1998),‘Contribution of the Human Tissue Archive to the Advancement of Medical Knowledge and the Public Health’, in National Bioethics Advisory Commission

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(ed.), Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, ii: Commissioned Papers (Rockville, Md.: NBAC).

MEDICAL RESEARCH COUNCIL (2001), Human Tissue and Biological Samples for Use in Research: Operational and Ethical Guidelines, <http://www.mrc.ac.uk/pdf-tissue guide

fin.pdf>, accessed 19 June 2006.

NUFfiELD COUNCIL ON BIOETHICS (1995), ‘Human Tissue: Ethical and Legal Issues’, <http://www.nuffieldbioethics.org>, accessed 19 June 2006.

ROSS, L. FRIEDMAN (2001), ‘Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV’,

Journal of Law, Medicine and Ethics, 29: 141.

TAKALA, T. (1999), ‘The Right to Genetic Ignorance Confirmed’, Bioethics, 13: 288 – 93. (2001), ‘Genetic Ignorance and Reasonable Paternalism’, Theoretical Medicine and

Bioethics, 22/5: 485 – 91.

UNDERWOOD, J. (2001), Vice-President of the Royal College of Pathologists in interview with the BBC, 31 Jan. 2001, <http://news.bbc.co.uk/1/low/talking point/forum/1144293. stm>, accessed 19 June 2006.

c h a p t e r 1 1

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F O R D I G N I T Y O R M O N E Y: F E M I N I S T S O N T H E

C O M M O D I F I C AT I O N

O F WO M E N ’ S

R E P R O D U C T I V E

L A B O U R

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C A R O LY N M C L E O D

RACHEL is a beautiful woman who is faced with a difficult choice. She is in love with a handsome man; yet if she chooses to be with him, she may be happy but she won’t be rich. She could choose to be without him, however, and take a million dollars instead, in which case she would be rich but alone. What to do ? If you think women only face this sort of question on the hit American reality television

I am grateful to Amanda Porter for her research assistance and to Bonnie Steinbock, Andrew Botterell, and Franc¸ oise Baylis for their comments on drafts of the chapter. I would also like to thank the Stem Cell Network, a member of the Networks of Centres of Excellence program, for support in the way of funding, and the Lupina Foundation for giving me a fellowship at the Munk Centre for International Studies (University of Toronto), which gave me much-needed time to write the chapter. In many ways, this chapter is a companion piece to a paper I co-wrote with Franc¸ oise Baylis (McLeod and Baylis 2006). One section of this chapter, namely ‘On Commodification and Alienability’, is a version of what appears in that other paper.

show For Love or Money (which is the inspiration for the title of this chapter), think again. The premise of the show is more real than it may first appear. If, unlike most undergraduate students in North America, you have never seen the show and think the above question might be an idle academic one, think again also. Love — for men, for children, or for themselves — has often been something women could choose only if they were willing to sacrifice their financial independence. Good women put their partners’ careers first and do not pursue demanding careers if they have small children at home. Good women, dignified women, also do not sell their sexual or reproductive services (e.g. by becoming prostitutes or contract pregnant women), even if doing so could get them out of poverty or serious debt. For women, being ‘for money’ has often meant being against love or dignity.

The dilemma of dignity or money presents itself to women in new ways in the current age of technological reproduction. In some legal jurisdictions,1 women can now sell forms of reproductive labour that in the past were non-existent: they can undergo oocyte retrieval for the purpose of selling oocytes, or they can engage in commercial, gestational contract pregnancy. Oocyte vendors respond to a demand for oocytes used in treating some forms of female infertility, or for research, particularly human embryo research done on embryos that are created for the research itself (which would include some embryonic stem cell research). As oocyte vendors, women commit themselves to performing the laborious task of oocyte retrieval, and consent to use this reproductive labour not for their direct reproductive benefit, but for the reproductive benefit of others, as women do with contract pregnancy.2 While women who sell such labour may get healthy sums of money in return, they also may sacrifice their dignity as women. Traditionally at least, dignified women did not treat their reproductive potential as a source of cash.

At issue here is the moral permissibility of commodifying women’s reproductive labour, particularly given the double bind, or binds, that such commodification poses for women. Should women be able to treat their own reproductive labour as a commodity, that is, as something that can be traded for a price ? Should others encourage them to do so, despite the difficulty many women would find in choosing whether to sell such labour ? Assuming that ethical restrictions exist on what things can properly be commodified, it is an open question whether women’s reproductive labour is among these things. This question is both open and difficult, for a number of reasons. For example, while the financial independence that the selling of such labour could offer women is in some sense empowering, the work

1 These include many states in the United States, but exclude, for example, all areas of Canada, Britain, France, and Australia.

2 Following Donna Dickenson (2001: 211), I assume that when women sell or donate oocytes or embryos, they are engaged in a form of labour, since the oocyte retrieval process involves mental or physical exertion as well as physical pain on the woman’s part (see below for a description of this process). Labour is simply the ‘exertion of the faculties of the body or mind, especially when painful or compulsory’ (Oxford English Dictionary online).

ON COMMO DIfiCAT ION AND ALIENABILIT Y

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To begin: when exactly is women’s reproductive labour commodified? And is commodifying it a bad thing, given the nature of commodification ? In other words, is commodification inherently bad ? It turns out that commodification can be, morally speaking, malign or benign. Whether one commodifies something malignly depends in part on whether that thing is normatively alienable to persons (or to other beings with moral worth). Something is alienable to us if it is separable from us; and something is normatively (or benignly) alienable to us if it is separable without causing us harm or degradation. When we treat something that we possess as a commodity, we treat it as an ‘item of trade’ (OED), that is, as something that we can trade away and therefore separate from ourselves, to some degree at least. But we cannot separate everything from ourselves and remain intact as persons; therefore, we cannot commodify everything benignly. Understanding commodification and alienability, and how they connect up with one another, is crucial for navigating smoothly through the ethical debate on commodifying women’s reproductive labour.

Commodification

First consider commodification: when we commodify something, we ‘take that which is not already a commodity and make it into, or treat it as though it were, a commodity. Simple enough, but what the heck is a commodity ?’ (McLeod and Baylis 2006: 3). Marx (1867/1954: 43) wrote that ‘A commodity is, in the first place, an object outside us, a thing that by its properties satisfies human wants of some sort or another.’ The satisfaction of human wants is the use value of the commodity for Marx. As he notes, however, something can have use value without its being a commodity. For example, I might (poorly) design a coat and only wear it myself, to satisfy my desire for warmth, rather than sell it or trade it. In that case, the coat is not a commodity. ‘To become a commodity a product must be transferred to another, whom it will serve as a use-value, by means of an exchange’ (Marx 1867/1954: 48). In other words, a commodity is fundamentally an item of trade. As such, it has exchange value as well as use value.

In his description of commodities, Marx (1867/1954: 43 – 87) speaks of commodities as though they were essentially objects, which is not obviously the case. Arguably, a service can be a commodity, and a service is not an object. With some services, the true commodity may just be the product of the service (e.g. a clean house in the case of cleaning as a service); but with other services, such as reproductive services, there may be no product in the end (i.e. no baby or no oocyte), yet the person who performs the service may be compensated nonetheless, which suggests that the service itself is a commodity. For example, some women