Hostname: page-component-586b7cd67f-vdxz6 Total loading time: 0 Render date: 2024-11-28T22:30:25.108Z Has data issue: false hasContentIssue false
  • English
  • Français

The Right Not to Know and the Duty to Tell: The Case of Relatives

Published online by Cambridge University Press:  01 January 2021

Niklas Juth
Get access Rights & Permissions [Opens in a new window]

Extract

This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the “index-person,” is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.

The index-person can have several reasons to take an interest in obtaining her genetic information. She may want to know if she has a genetic predisposition for a disorder in order to take measures for preventing its development. Even if there are no preventive measures, as is the case with Huntington's disease, for instance, she may still want to know whether she has the mutation, in order to adjust her future plans. These interests that an individual may have in obtaining genetic information have been used to argue in favour of a right to know.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 42 , Issue 1 , Spring 2014 , pp. 38 - 52
Copyright
Copyright © American Society of Law, Medicine and Ethics 2014

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

With proper background knowledge, there are other ways to obtain genetic information about oneself than through genetic testing, e.g., through family history, but in this text we will confine to genetic information obtained through DNA-analysis.Google Scholar
Takala, T., Genes, Sense and Sensibility: Philosophical Studies on the Ethics of Modern Biotechnologies (Helsinki: Reports from the Department of Philosophy, University of Turku, 2000): at 94–100.Google Scholar
Herring, J. Foster, C., “‘Please Dont Tell Me: The Right Not to Know”, Cambridge Quarterly of Healthcare Ethics 21, no. 1 (2012): 20–29, at 22–24.CrossRefGoogle Scholar
Takala, T., “Genetic Ignorance and Reasonable Paternalism”, Theoretical Medicine and Bioethics 22, no. 5 (2001): 485–491, at 487.CrossRefGoogle ScholarPubMed
Laurie, G. T., “In Defence of Ignorance: Genetic Information and the Right Not to Know”, European Journal of Health Law 6, no. 2 (1999): 119–132, at 122.CrossRefGoogle ScholarPubMed
Chadwick, R., The Philosophy of the Right to Know and the Right Not to Know, in Chadwick, R. Levitt, M., and Shickle, D., eds., The Right to Know and the Right Not to Know (Aldershot: Ashgate Publishing Company, 1997): 13–22, at 18.Google Scholar
The interest individuals have in their genetic privacy is developed and forcefully defended in Laurie, G. T., Genetic Privacy: A Challenge to Medico-Legal Norms, (Cambridge: Cambridge University Press, 2002): Passim.Google Scholar
This is the group of people that clinical geneticists are interested in when constructing a family tree or pedigree of the index-person; see Harper, P. S., Practical Genetic Counselling, 7th edition (London: Hodder Arnold, 2010): at 5–8.Google Scholar
Thorogood, A. Knoppers, B. M. Dondorp, W. J., and de Wert, G. M. W. R., “Whole-Genome Sequencing and the Physician”, Clinical Genetics 81, no. 6 (2012): 511–513.CrossRefGoogle ScholarPubMed
For an overview, see Marietta, C. McGuire, A. L., “Currents in Contemporary Ethics: Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?”, Journal of Law, Medicine & Ethics 37, no. 2 (2009): 369–374.CrossRefGoogle ScholarPubMed
Kagan, S., The Limits of Morality (New York: Oxford University Press, 1989): at 219–226. In the discussion of rights to genetic information, Hohfelds concept of claim-rights, which include both options and injunctions, are often presupposed (see Häayry, M. Takala, T., Genetic Information, Rights, and Autonomy, Theoretical Medicine and Bioethics 22, no. 5 (2001): 403–414, at 404 Rhodes, R., Genetic Links, Family Ties and Social Bonds: Rights and Responsibilities in the Face of Genetic Knowledge, Journal of Medicine and Philosophy 23, no. 1 (1998): 10–30, at 15. So, terminology sometimes differs; for example, options are sometimes called licences; see Häayry, Takala, , id., at 404).Google Scholar
See Kagan, , supra note 11.Google Scholar
Rather, , if anything, it is explicitly denied; see, for example, Rhodes, supra note 11, at 26.Google Scholar
Harris, J. Keywood, K., “Ignorance, Information, and Autonomy”, Theoretical Medicine and Bioethics 22, no. 5 (2001): 415–436.CrossRefGoogle ScholarPubMed
Ost, D. E., “The ‘Right Not to Know”, Journal of Medicine and Philosophy 9, no. 3 (1984): 301–312; Rhodes, supra note 11.CrossRefGoogle Scholar
See Rhodes, , supra note 11, at 12–14.CrossRefGoogle Scholar
Takala, T. Häayry, M., “Genetic Ignorance, Moral Obligations and Social Duties”, Journal of Medicine and Philosophy 25, no. 1 (2000): 107–113, at 109.CrossRefGoogle ScholarPubMed
Id., at 111.Google Scholar
As claimed, for instance, by Ost, supra note 15.Google Scholar
See Rhodes, , supra note 11, at 13–14.Google Scholar
An exclusion test, selecting against the fourth chromosomes of the affected grandparent, can also be used if it is known which grandparent that is a carrierGoogle Scholar
see Asscher, E. Koops, B. J., “The Right Not to Know and Preimplantation Genetic Diagnosis for Huntingtons Disease”, Journal of Medical Ethics 36, no. 1 (2010): 30–33. For instance, Dutch law requires that prospective parents that want PGD for Huntingtons test themselves first; see Asscher, Koops, , supra note 21.CrossRefGoogle ScholarPubMed
I am here presupposing the premise that if one makes an abortion or discards an embryo, the very same child cannot in fact be born through later pregnancy or grow from another embryo. Although not self-evident, this assumption should be uncontroversial (especially regarding abortion) see Parfit, D., Reasons and Persons (Oxford: Oxford University Press, 1984): at 351–356.Google Scholar
For a recent discussion and further references, see Hope, T. McMillan, J., “Physicians Duties and the Non-Identity Problem”, American Journal of Bioethics 12, no. 8 (2012): 21–29.CrossRefGoogle ScholarPubMed
See Takala, Häayry, , supra note 17, at 109. Supposedly, Harriette and her husband have reasons to suspect that they are carriers of the gene to start with.Google Scholar
Similar examples in this regard would be Lesch-Nyhan and Krabbes disease; see Munthe, C., Pure Selection: The Ethics of Preimplantation Genetic Diagnosis and Choosing Children without Abortion (Gothenburg: Acta Universitatis Gothoburgensis, 1999): at 97.Google Scholar
What one should say is thus not that it is better for the child not to exist, but that it is better, on the whole, if the child never exists, and if the child is brought into existence, the child is harmed.Google Scholar
Even though the risk to contract a disease at some point in life due to a single gene disorder is 2–4%, very few of these diseases can unambiguously be claimed to make the affected persons life not worth living, and there is seldom initial suspicion that would make it an alternative for the parents to seek the genetic information in question; see Munthe, , supra note 26.Google Scholar
Parker, M. Lucassen, A., “Concern for Families and Individuals in Clinical Genetics”, Journal of Medical Ethics 29, no. 2 (2003): 70–73, at 73.CrossRefGoogle ScholarPubMed
For a more thorough argument in favour of these being the only two final or intrinsic values that can be realized for both the index-person and his relatives, see Juth, N., Genetic Information – Values and Rights: The Morality of Presymptomatic Genetic Testing (Saarbrüucken: Lambert Academic Publishing, 2012): at Chapter II.Google Scholar
Adelswüard, V. Sachs, L., Framtida skuggor: Samtal om risk, prevention och den genetiska familjen (Future Shadows: Conversations on Risk, Prevention and the Genetic Family) (Lund: Arkiv föorlag, 2002): at 83 Clarke, A., Commentary to: Hallowell, N. et al., Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information, Journal of Medical Ethics 29, no. 2 (2003): 74–83, at 80.Google Scholar
Although there may be psychological advantages for relatives, e.g., strengthened emotional bonds within family and time for psychological adjustment to cope with the (more or less probable) disease; see Juth, , supra note 30, at 54–55.Google Scholar
This strategy is implemented in, for instance, the UK and Sweden.Google Scholar
Some empirical findings seem to support this, for instance, see Hallowell, N. et al., supra note 31, at 75–77. They interviewed women who were diagnosed with breast and ovarian cancer and who tested for BRCA1/2. A large majority of these women stated that their primary motive for testing was the good of their relatives in some way or another, e.g., in terms of their autonomy and/or well-being.Google Scholar
Knoppers, B. M., “Genetic Information and the Family: Are We Our Brothers Keeper?”, Trends in Biotechnology 20, no. 2 (2002): 85–86, at 85.CrossRefGoogle Scholar
Beauchamp, T. L. Childress, J. F., Principles of Biomedical Ethics, 5th ed. (New York: Oxford University Press, 2001): at 304–305.Google Scholar
There seems to be some indication that they are, perhaps partly because they often also have the role of the researcher interested in collecting data; see Adelswüard, Sachs, , supra note 31, at 84–86.Google Scholar
See Knoppers, , supra note 35, at 86.Google Scholar
That is, the so called therapeutic gap remains; see Juth, , supra note 30, at 7 and section I.4.Google Scholar
See Juth, , supra note 30, at 53, 70–71, and 78–79.Google Scholar
Although this can be questioned as well, not least since the treatment of prophylactic mastectomy is burdensome in itself; see Juth, , supra note 30, at 52. This shows that further conditions should be added: that the prevention or treatment available must be sufficiently efficient and not too burdensome.Google Scholar
Doukas, D. J. Berg, J. W. “The Family Covenant and Genetic Testing”, American Journal of Bioethics 1, no. 3 (2001): 2–10.CrossRefGoogle ScholarPubMed
See Parker, Lucassen, , supra note 29, at 72.Google Scholar
See Clarke, , supra note 31, at 81.Google Scholar
It has even entered standard text books on medical ethics; see Hope, T., Medical Ethics: A Very Short Introduction (Oxford: Oxford University Press, 2004): at 97–98.CrossRefGoogle Scholar
Parker, M. Lucassen, A., “Genetic Information: A Joint Account?”, BMJ 329, no. 7458 (2004): 165–167, at 166.CrossRefGoogle ScholarPubMed
See, for example, Parker, Lucassen, , supra note 46, at 166; Knoppers, , supra note 35, at 86.Google Scholar
The argument has also been called the genetic information is familial thesis; see Liao, S. M., “Is There a Duty to Share Genetic Information?”, Journal of Medical Ethics 35, no. 5 (2009): 306–309, at 306.CrossRefGoogle Scholar
See, for instance, Holm, S., There Is Nothing Special about Genetic Information, in Thompson, A. Chadwick, R., eds., Genetic Information: Acquisition, Access and Control (New York: Kluwer Academics/Plenum Publishers, 1999): at 97–103 49.Juth, , supra note 30, at 373–374. Of course, when enough is at stake, we do think that considerations of confidentiality are outweighed by the interests of others when it comes to sharing information about contagious diseases with others who may find it informative, but this is far from saying that it should be a default.CrossRefGoogle Scholar
See Rhodes, , supra note 11, at 25.Google Scholar
Id., at 24. One can discuss whether this is disclosing genetic information, but one could easily change the case so that it is obviously about disclosure.Google Scholar
Id.Google Scholar
Rhodes concurs with this when discussing what reasons we normally present for having certain responsibilities; id., at 21.Google Scholar
See Clarke, , supra note 31, at 80.Google Scholar
Id.Google Scholar
See Juth, , supra note 30, at 94–106.Google Scholar
Id.Google Scholar
See Adelswäard, Sachs, , supra note 31, at 71–86.Google Scholar