The right to genetic ignorance confirmed

Bioethics

Volumn 13, Issue 3-4, 1999, Pages 288-293

  Takala, Tuija ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

CONFERENCE PAPER; ETHICS; GENETIC INCOMPATIBILITY; GENETICS; HUMAN; HUMAN RIGHTS; INFORMATION; SELF EVALUATION;

EID: 0032855371     PISSN: 02699702     EISSN: None     Source Type: Journal    
DOI: 10.1111/1467-8519.00157     Document Type: Conference Paper

References (18)

1. See eg. Chadwick, R., Levitt, M., and Shickle, D. (eds), The Right to Know and the Right not to Know (Avebury, Aldershot, 1997) and Räikkä, J., 'Freedom and the right (not) to know', Bioethics 12 (1998): 49-63.
2. See eg. Chadwick, R., Levitt, M., and Shickle, D. (eds), The Right to Know and the Right not to Know (Avebury, Aldershot, 1997) and Räikkä, J., 'Freedom and the right (not) to know', Bioethics 12 (1998): 49-63.
3. Rhodes, R., 'Genetic links, family ties, and social bonds: rights and responsibilities in the face of genetic knowledge', Journal of Medicine and Philosophy 23 (1998): 10-30.
4. Ibid. In her opinion we have the duty to participate because there is no right to remain in ignorance and because of our relationships with others in need of our contribution.
5. Chadwick, R., 'The philosophy of the right to know and the right not to know' in Chadwick, Levitt and Shickle (eds), 1997, 18.
6. I have excluded the discussion on the possible indirect harm caused to others in the sense that 'they could have benefitted had they had the information'. As this raises even more complicated questions it has only been referred to in the literature as it might constitute harm-to-others situations. See e.g. Hoedemaekers, R.H.M.V., Normative Determinants of Genetic Screening and Testing: An Examination of Values, Concepts and Processes Influencing the Moral Debate (Ponsen en Looijen B.V., Wageningen, 1998).
7. What actually counts as harm in relation to future children is a matter of dispute. On this see e.g. Feinberg, J, Harm to Others (Oxford University Press, Oxford, 1984, 98-104) and John Harris's critique in Clones, Genes, and Immortality: Ethics and the Genetic Revolution (Oxford University Press, Oxford, 1998, 104-119).
8. What actually counts as harm in relation to future children is a matter of dispute. On this see e.g. Feinberg, J, Harm to Others (Oxford University Press, Oxford, 1984, 98-104) and John Harris's critique in Clones, Genes, and Immortality: Ethics and the Genetic Revolution (Oxford University Press, Oxford, 1998, 104-119).
9. This is a phrase used by Ruth Chadwick (1997, 15, italics mine). To refer to a possible future child, before conception when, even if both parents are known, the possible genotypes are numerous - as the child (the one sitting on the edge of a cloud?) presupposes metaphysics that are hardly philosophically undisputable. But this is, in my view, a typical example of the hidden metaphysical presuppositions used in analyses concerning future children.
10. On the discussion of this matter see e.g. Kuhse, H. and Singer, P., Should the Baby Live? The Problem, of Handicapped Infants (Oxford University Press, Oxford 1985). Their book was written before the era of genetic screening and deals mainly with suffering that justifies abortion or infanticide. With the screening of possible parents or preimplants (when using the IVF the fertilised eggs can be and are screened beforehand and the healthiest ones are selected for implantation) some of the ethical dilemmas of abortion (if seen as such) can be avoided.
11. This presupposes that we think that neither moralism nor paternalism is justifiable. On moralism and paternalism in the field of human genetics see e.g. Husted, J, 'Autonomy and a right not to know' in Chadwick, Levitt and Shickle (eds), 1997, 66-68. For a more general discussion see e.g. Ten, C.L., 'Paternalism and Morality', Ratio 13 (1971): 56-66.
12. This presupposes that we think that neither moralism nor paternalism is justifiable. On moralism and paternalism in the field of human genetics see e.g. Husted, J, 'Autonomy and a right not to know' in Chadwick, Levitt and Shickle (eds), 1997, 66-68. For a more general discussion see e.g. Ten, C.L., 'Paternalism and Morality', Ratio 13 (1971): 56-66.
13. I owe this point to Dr. Angus Clarke.
14. Rhodes, 1998, 18.
15. I have submitted a more detailed discussion of these matters to the Journal of Philosophy and Medicine, where Rhodes's article originally appeared.
16. Hare, R.M., Moral Thinking: Its Levels, Method and Point (Clarendon Press, Oxford, 1981, ch. 3).
17. Räikkä, 1998, 50-51, 62.
18. My thanks are due to Professors Peter Singer and Julian Savulescu, and to an anonymous referee of Bioethics, for their critical and insightful comments.