Genetics and the ethics of community

Heythrop Journal - Quarterly Review of Philosophy and Theology

Volumn 47, Issue 2, 2006, Pages 226-256

  Mannion, Gerard ^a  

^a LIVERPOOL HOPE UNIVERSITY   (United Kingdom)

Author keywords

[No Author keywords available]

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EID: 61249218173     PISSN: 00181196     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1468-2265.2006.00286.x     Document Type: Article

References (70)

1. Leading examples of such organisations and ELSI projects include the HumGen database on the social, ethical and legal aspects of human genetics, http://www.humgen.umon-treal.ca
2. (of special relevance to this paper is its Genetics and Society Project), the work of the ELSI Committee of HUGO the Human Genome Organisation, http://www.hugo-international.org/hugo
3. the pioneering ELSI Project at Dartmouth College, USA, http://www.dartmouth.edu/ethics/index.html
4. the work of the US based Hastings Center for Bioethics, http://www.thehastingscenter.org
5. the Canadian Catholic Bioethics Institute, http://www.utoronto.ca/ stmikes/bioethics
6. the UK Genome Web HGMP Resource Centre for ELSI, http://www.hgmp.mrc.ac. uk/GenomeWeb/misc-elsi.html
7. the UK based Gene Watch, http://www.genewatch.org; ETHOX - The Oxford Centre for Ethics and Communication in Health Care
8. http://www.ethox.org.uk, and so on. Their number, and the collaboration between such organisations, grows on
9. Such matters are complex, as Ellen Wright Clayton has indicated, 'Understanding the social effects of genomics requires an analysis of the ways in which genetic information and a genetic approach to disease affect people individually, within their families and communities, and in their social and working lives'. Ellen Wright Clayton, 'Ethical, Legal and Social Implications of Genomic Medicine', New England Journal of Medicine 349: 6 (August 7, 2003), 562. Obviously the focus of any one paper must be selective
10. For a clear and concise introductory discussion of the technique of PGD see Norman Ford, The Prenatal Person: Ethics from Conception to Birth, Oxford, Blackwell, 2002, 61-2, 73
11. See, also, A. M. Nagy, et al., 'Scientific and Ethical Issues of Preimplantation Diagnosis', Annals of Medicine 30/1 (1998), 1-6
12. Bonnie Steinbeck, 'Preimplantation Genetic Diagnosis and Embryo Selection', in Justine Burley and John Harris, A Companion to Genethics, Oxford, Blackwell, 2004, 175-90
13. For wider debates in this area, beyond PGD, cf. Bonnie Steinbeck, Life Before Birth: The Moral and Legal Status of Embryos and Newborns, New York, Oxford University Press, 1997
14. Richard A. McCormick, 'Who or What is the Pre-embryo', chapter 4 of his Corrective Vision, London Sheed and Ward, 1994
15. HFEA's working definition can be found on their website, www.hfea.gov.uk/AboutHFEA/HFEAPolicy/Preimplantationgeneticdiagnosis
16. Particular ethical concerns surrounding the path of this technique to legality, especially in relation to fears that 'Scientific advances in reproductive techniques' are 'racing ahead of ethics', were raised by Richard Nicholson (editor of the Bulletin of Medical Ethics), in 'Perfect Babies, Imperfect Ethics', The Tablet, 10 August, 2002, 7-8
17. rd, 2004
18. Holly C. Goodin, Benjamin Wilfond, Karina Boehm and Barbara Bowles Biesecker, 'Unintended Messages: The Ethics of Teaching Genetic Dilemmas', Hastings Center Report, 32, no. 2 (2002), 37
19. Thus, for example, further questions relating to population genetics, related issues concerning individual, familial and communitarian consent or the implications of initiatives such as the HapMap Project which aims to develop a public resource that will help researchers find genes associated with human disease and response to pharmaceuticals (in relation to the latter, cf. www.hapmap.org)
20. Here, Jürgen Moltmann's words are instructive, 'a person is not an individual. The distinction is simple, but seldom made. According to its Latin meaning, an individuum is something ultimately indivisible, like "atom" in Greek. A person, in comparison is - as Martin Buber showed (following Hegel, Feuerbach, and Hölderlin) - the individual human being in the resonant field of his or her relationships, the relationships of I, Thou and We, I-Myself and I-It. In the network of relationships, the person becomes the human subject of taking and giving, listening and doing, experiencing and touching, hearing and responding. We approach humanism only when we pass from individualism to personalism', Jürgen Moltmann, 'Freedom in Community between Globalization and Individualism - Market Value and Human Dignity' in Jürgen Moltmann, God for a Secular Society - The Public Relevance of Theology, London, SCM, 1999, 156
21. From the Heart of the Church: The Catholic Social Tradition by Judith A. Merkle, Collegeville, Michael Glazier, 2004, 243
22. Of course, the term, as used in this paper, is meant in the sense of relating an ethics of community to ethical considerations in genetic science and medicine, as opposed to suggesting there is only one ethics of community or of genetics. To help give some hint as towards the argument that will develop in the present paper, consider the following words from Frank Kirkpatrick 'Mutual community is the singular locus that creates and reconciles diversity, particularity, fulfilment, and universality; the conditions of human community set the limits to diversity but at the same time provide the basis for its expression since no community can be fulfilling to its members unless it nourishes their particularities as individuals' A Moral Ontology for a Theistic Ethic: Gathering The Nations in Love and Justice, by Frank G. Kirkpatrick, Ashgate, 2003, 6
23. Cf. D. B. Paul, Controlling Human Heredity: 1865 to the Present, Amherst, NY, Humanity Books, 1998, esp. chapter 7 'From Eugenics to Human Genetics'
24. Cf., also, 'Eugenics and Its Shadow', chapter two of Allen Buchanan, Dan. W. Brock, Norman Daniels, Daniel Wikler, From Chance to Choice: Genetics and Justice, Cambridge, Cambridge University Press, 2000
25. A forthcoming chapter by Celia Deane Drummond also provides an informative discussion of the ethical issues involved here, 'Living in the Shadow of Eugenics', Genetics and Christian Ethics, Cambridge, Cambridge University Press, 2005
26. As D. B. Paul, has illustrated, 'The connection between eugenics and human genetics' is somewhat striking, as witnessed in the history and development of the American Society of Human Genetics, founded in 1948. Paul states that 'From the start, human genetics was intertwined with - and sometimes indistinguishable from - eugenics', Controlling Human Heredity, 121
27. Or particular genetic 'maladies' to cite Bernard Gert's term - see Bernard Gert, Morality and the New Genetics, Boston, Jones & Bartlett, 1996 (along with C. M. Culver who authored chapter on the concept of genetic malady in this volume). The problem with their definition of malady, as Gert has somewhat admitted, is that it is prone to cultural bias. I believe it is a highly subjective definition and rests upon grounds which are far from universal, despite the claims to universalisability of its authors
28. The literature on genetic prejudice and discrimination is already large and growing. Cf., for example, Lisa N. Geller, 'Current Developments in Genetic Discrimination', chapter thirteen of The Double-Edged Helix: Social Implications of Genetics in a Diverse Society, ed. J. S. Alper et al., Baltimore, John Hopkins University Press, 2002
29. and introductory essays on various debates of relevance here in Justine Burley and John Harris, A Companion to Genethics, Oxford, Blackwell, 2004, Part IV: Genotype, Phenotype and Justice (chapters 18-25) and Part V: Ethics, Law and Policy (chapters 26-34)
30. For examples of other representative views concerning the relationships of PGD to eugenics, cf. J. Milliez and C. Sureau, 'Pre-implantation Diagnosis and the Eugenics Debate: Our Responsibilities to Future Generations', in Ethical Dilemmas in Assisted Reproduction, eds. F. Shenfield and C. Sureau, New York, Parthenon Publishing Group, 1997
31. Joseph D. Schulman and R.G. Edwards, 'Preimplantation Diagnosis is Disease Control Not Eugenics', Human Reproduction 11 (1996), 463-4
32. Certain arguments in this section are developed at greater length in a forthcoming article, 'Horses and Carts: Ethics, Legislation and Regulation' in Think - A Periodical of the Royal Institute of Philosophy 2006
33. Here, debates concerning the precautionary principle (where decisions are made through erring on the side of caution with regard to potential negative consequences of particular technologies) are obviously relevant. But a fundamental problem is that some, who favour much more permissiveness in allowing certain genetic techniques to be developed and practiced, argue that it is unclear 'in which direction (if any) caution lies', John Harris, 'The Ethical use of Human Embryonic Stem Cells', chapter 12 of Justine Burley and John Harris, A Companion to Genethics, Oxford, Blackwell, 2004, 161. In other words, how do we decide where to exercise caution - what pros and cons do we weigh against one another? I might add that, perhaps a more telling problem here, concerns the often consequentialistic nature of the thinking behind many applications of the precautionary principle. Numerous ethical theorists have demonstrated the potential pitfalls that lurk behind consequentialist ethical reasoning (at least when applied in isolation from other methods and theories in ethics), in general
34. The famous debates concerning 'the man on the Clapham omnibus'. See, Basil Mitchell, Law Morality and Religion in a Secular Society, Oxford, OUP, 1970
35. th, 2004
36. John Habgood, 'Test-tube Idolatry', The Tablet, 2 August, 2003, 6
37. John Habgood, 'Test-tube Idolatry', 6
38. rd, 2003, 25
39. th 2005
40. I.e., in relation to ethical consideration of aspects of human life and death. Singer deems the 'moment' which marks the definitive switch from one to the other as the legal ruling (in 1993) that doctors could withdraw medical sustenance from the Hillsborough disaster victim, Tony Bland, Peter Singer, Rethinking Life and Death, Oxford, OUP, 1995
41. See, also, Peter Singer, 'Is the Sanctity of Life Ethic Terminally Ill?', Bioethics 9 (1995), 327-43
42. reprinted in Peter Singer, Unsanctifying Human Life, ed. Helga Kuhse, Oxford, Blackwells, 2002, 246-61
43. Cf., also, further essays in this collection, especially parts five ('Unsanctifying Human life') and six ('Choosing Between Lives'). Additional aspects of Singer's moral philosophy in general are critiqued in Dale Jamieson (ed.), Singer and His Critics, Oxford, Blackwell, 1999
44. Norman Ford also discusses and critiques Singer's viewpoints in this field, e.g., The Prenatal Person, 3-9
45. Respectively, Quality Adjusted Life Years and Disability Adjusted Life Years - both involve the assignation of numerical 'scores' pertaining to different conditions and their impact upon the lives of individuals or of populations. The former is, in essence, a form of cost-utility analysis of health intervention - i.e., the benefit of health-care intervention is determined by calculating how many 'quality adjusted life years' any person would gain with and without such intervention. They were developed by the UK health economist Alan Williams - one year's worth of healthy life expectancy has a 'value' of 1. A year of 'unhealthy' life expectancy is worth less than 1. The worse the quality of life, the closer to zero the value (hence 'quality adjusted'). To be dead - or as good as, equates to zero itself (and one's QALY could be judged to be worse, hence negative). In Williams' opinion, a 'beneficial health care activity . . . generates a positive amount of QALYs' and its efficiency is measured by the lowest cost per QALY possible: 'A high-priority heath care activity is one where the cost-per-QALY is low, and a low-priority activity is one where cost-per-QALY is high', Alan Williams, 'The Value of QALYs', Health and Social Sciences Journal, (July 1985), 3. DALYs, on the other hand, were adopted by the World Bank in 1993. They are supposed to offer a measurement of the 'burden of disease'. I.e., it works in the opposite direction, from a starting point of zero (meaning 'no significant health problem') to death or 'equivalent' (i.e. a 'score' of 1 or unity)
46. Common objections against the employment of QALYs and DALYs include that they diminish the value placed upon the lives of those who already suffer from a particular condition, compared with those who, as yet, do not; furthermore healthcare programs for the former are perceived to be of less benefit than preventative ones offered to the latter (see the work of Erik Nord, here, e.g., Cost Value Analysis in Health Care, Cambridge, Cambridge University Press, 1999)
47. A forceful objection to the use of DALYs is offered by Carl Hampus Lyttkens, 'Time to Disable DALYs? On the Use of DALYs in Health Policy', European Journal of Health Economics, (2003), 195-202
48. On the other side, for those who would support and defend the use of QALYs, cf., for example, Helga Kuhse and Peter Singer, 'Allocating Health Care Resources and the Problems of the Value of Life', chapter eighteen of Peter Singer, Unsanctifying Human Life, ed. Helga Kuhse, 265-80
49. On the specific point concerning the 'double jeopardy' under which the use of QALYs places individuals suffering from certain conditions, cf., P. Singer, J. McKie, H. Huhse and J. Richardson, 'Double Jeopardy and the use of QALYs in Health Care Allocation', Journal of Medical Ethics, 1995 June, 21 (3), 151-7
50. (also reprinted in Singer, Unsanctifying Human Life, chapter nineteen, 282-94)
51. Ronald M. Green, 'Parental Autonomy and the Obligation Not to Harm One's Child Genetically', Journal of Law, Medicine & Ethics, 25 (1997), 5
52. Green thus appears to equate, for example, this situation with that of a pregnant woman smoking heavily and thus harming her child. His opponents would obviously disagree wholeheartedly with his reasoning here as to the moral equivalence of such cases. A useful analogy here would be to the different types of euthanasia (such as voluntary contrasted with involuntary and active contrasted with passive, etc). Or again, various interpretations of the principle of double effect are obviously of relevance, also, particularly the debates surrounding the proportionalist turn in relation to natural law thinking (cf. Bernard Hoose, Proportionalism: the American Debate and its European Roots, Washington DC, Georgetown University Press, 1987)
53. Green, 'Parental Autonomy and the Obligation Not to Harm One's Child Genetically', 8
54. Norman F. Ford, The Prenatal Person, 73
55. Ford cites further examples of those who would adopt a similar position to Green here, including Walter Glannon, 'Genes, Embryos and Future People', Bioethics, vol. 12 (1998), 187-205, 209-10
56. Sozos J. Fasouliotis and Joseph G. Schenker, 'Preimplantation Genetic Diagnostic Principles and Ethics', Human Reproduction, 13/8 (1998), 2241
57. Ford, The Prenatal Person, 73
58. Although space does not permit its detailed treatment, here we should also take note that another major area of concern is that of race. Issues of concern here include debates surrounding the social construction of race, along with the biological influence upon (and justifications offered for) such construction and the subsequent implications of this (in terms of issues such as genetic and other forms of discrimination, along with issues of healthcare, equal opportunities etc.). On the social construction of race, cf. Joseph L. Graves, The Emperor's New Clothes, 2001
59. and SS-J. Lee, J. Mountain and B. A. Koenig, 'The Meanings of "Race" in the New Genomics: Implications for Health Disparities Research', Yale Journal of Health Policy, Law and Ethics 1: 33-75 (2001). A related example is the current preference amongst many adoptive parents in the US for children of Asian, and in particular, Chinese extraction. Such a preference is often underpinned with a host of quasi-genetic logic. For example, some adoptive parents believe the children they are adopting will thus be more intelligent, industrious and so on
60. For a definition of the two techniques and the difference between them, see Ford, The Prenatal Person, chapter 7, 'Prenatal Screening and Diagnosis', 121-43, esp. 123-5
61. See the work of those associated with 'The Disability Rights Critique of Prenatal Testing': http://lgruen.web.wesleyan.edu/wescourses/2003s/biol118/01/ disabilityrights.pdf. Although Asch is usually primarily associated with the 'Disability Rights Critique' of genetic medicine, her arguments have a much wider range of application in the debates this present paper is concerned with
62. Adrienne Asch 'Prenatal testing: Implications for Family and Society', paper presented to the Teaching the Ethical, Legal and Social Implications of the Human Genome Summer Institute, Ethics Institute, Dartmouth College, USA, August 2003
63. Habgood, 'Test-tube Idolatry', 6. Obviously not all disabilities impact upon individuals and their families in an equal fashion, but this does not affect the main arguments under consideration here
64. Adrienne Asch, 'Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy', American Journal of Public Health vol. 89, No. 1 (November 1999), 1650. None of this is to ignore that social provision for disabled people did improve considerably in many societies throughout the twentieth century. It is to point out that current developments could have a regressive effect upon such advances, as well as to indicate that efforts to improve the social lot of those with disabilities still have a very long way to go
65. nd September 2005
66. See also, Adrienne Asch, 'Why I Haven't Changed My Mind about Prenatal Diagnosis: Reflections and Refinements', in Prenatal Testing and Disability Rights, eds. Erik Parens and Adrienne Asch, Washington DC, Georgetown University Press, 234-58, 2000, where Asch develops and refines her arguments further
67. The tests in question here ranged from those for certain forms of breast cancer, to Huntington's Disease, to haemochromatosis. The work of the project moved beyond the initial investigative stages in January 2006. Its ongoing work can be followed through its reports at www.gdproject.org
68. Cf., again, Lisa N. Geller, 'Current Developments in Genetic Discrimination'
69. It is worth noting here that I believe that very specific and valuable contributions can be offered here by the moral sub-disciplines of theology and philosophy in relation to pedagogical issues in this field, as well as in relation to the debates surrounding perceived differences in method, telos and delivery between 'applied' and 'professional' ethics. In particular, they might seek to counter that 'scientific fundamentalism' which breeds an intolerance of ethical, religious and communitarian perspectives that appear to place restrictions upon aspects of research and technological development. One welcome example in relation to the issue of social ontology here is Frank G. Kirkpatrick, 'A Moral Ontology for a Theistic Ethic - Gathering the Nations in Love and Justice, Harmondsworth, Ashgate, 2003. One eagerly anticipates the debates generated by publication of the work of the Genetics, Theology and Ethics Group being convened by Lisa Sowle Cahill and J. Donald Monan of Boston College, USA, published by Continuum in 2005
70. Hilary and Steven Rose, 'Playing God', 25