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When Is My Genetic Information Your Business? Biological, Emotional, and Financial Claims to Knowledge

Published online by Cambridge University Press:  22 December 2009

RUTH WILKINSON
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Deciding to undergo a predictive genetic test is difficult. The patient has no symptoms that might tip the balance in favor of the test, and knowledge of the information might have significant implications for her physical and mental health, her family, and her financial position. Furthermore, although the decision to undergo many medical tests might reasonably be said to be the patient's own business, it could be argued that predictive genetic tests are different. Dean Bell and Belinda Bennett argue that genetic information has a “shared” or “familial” character due to the likelihood of it affecting others. If others might be affected by the results of your test, then it is certainly plausible to suggest that they have an interest in knowing the information. If that is the case, then it could also be argued that they are entitled to be considered when you are deciding whether to undergo a test.

Type
Special Section: Open Forum
Information
Cambridge Quarterly of Healthcare Ethics , Volume 19 , Issue 1 , January 2010 , pp. 110 - 117
Copyright
Copyright © Cambridge University Press 2010

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References

1. Bell D, Bennett B. Genetic secrets and the family. Medical Law Review 2001;9:130–61 at p. 130.

2. Mill JS. On Liberty. London: Penguin; 1985.

3. See Feinberg J. The Moral Limits of the Criminal Law. Oxford: Oxford University Press; 1984.

4. See note 2, Mill 1985:68.

5. See note 2, Mill 1985:71.

6. Takala T, Gylling H. Who should know about our genetic makeup and why? Journal of Medical Ethics 2000;26:171–4 at page 171.

7. This raises an interesting idea. Imagine that I have multiple personalities and that each of my personalities is aware of the others. Should Ruth, the original person, have to take the views of Ruth1, Ruth2, Ruth3, and Ruth4 into account? Furthermore, can we be sure that Ruth has the final say? If Ruth is not in favor of testing, but Ruths1–4 all want a test, how should Ruth decide? What if it is Ruth2 who sought the test in the first place? Can Ruth2 decide? These questions are outside the scope of this paper, but hopefully prove interesting food for thought!

8. By which I mean people who are connected to our decisionmaker in different ways.

9. The question of the nature of harm is a matter for another paper, which would need to discuss whether our relatives could in fact be harmed, and whether being at risk can be considered a harm. For the time being, we can assume that being at risk can be a harm.

10. Their change in risk factor would not be as a direct result of your change in status. Your positive test diagnoses your parent, in our example, your mother. Your siblings' risks change because of the change in your mother's status, not the change in your status.

11. At the moment this particular argument can only apply to heterosexual couples. Once artificial gamete technology has been developed further and it is possible for homosexual couples to have children genetically related to both of them, the argument could be extended.

12. I am grateful to Anthony Mark Cutter for raising this issue. There is not enough space in this paper to give it the consideration it deserves.

13. For a detailed discussion of the philosophy of the NHS see chapter 3 of Montgomery J. Health Care Law, 2nd ed. Oxford: Oxford University Press; 2000.