Is There A Duty to Share Genetic Information?

A number of prominent bioethicists such as Mike Parker, Anneke Lucassen, and Bartha Maria Knoppers have called for the adoption of a system in which by default, genetic information is shared among family members. In this paper, I suggest that a main reason given in support of this call to share genetic information among family members is the idea that genetic information is essentially familial in nature. Upon examining this ‘familial nature of genetics’ argument, I show that most genetic information are only shared in a weaker way among family members and do not necessarily lead to the actual manifestation of particular diseases. The upshot is that the idea that genetic information is familial in nature does not provide a sufficient ground for why we should move towards a system in which by default, genetic information is shared among family members. [Journal of Medical Ethics 35(5) 2009: 306-309] [pdf | html]

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Jan 20th, 2009 | By | Category: Bioethics, Latest Research

2 comments
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  1. Mr. Liao,

    I enjoyed your article as a response to what seems to be the somewhat one-sided ethical view with regard to confidentiality and genetics.

    However, I find it hard to accept your equation of duty to probability. It is true that a threshold must have to be passed for confidentiality to be breached, but I do not think that you have made the argument that this threshold should necessarily be based on the likelihood of expression of the disease. I would suggest other factors, such as treatability of the potential disease are more relevant than the likelihood of its expression.

    Yours,
    D Peat

  2. Dear Daniel,

    Many thanks for your comments on my paper. I don’t think that we disagree. Think of meeting the threshold of the probability of harm as a necessary rather than a sufficient condition for there to be a duty to breach confidentiality. On this understanding, even if the threshold were met, you are quite right that other factors such as treatability might also need to be present for it to be sufficient to breach confidentiality. My claim is only that it not even clear that the threshold of the probability of harm (a necessary condition) is met in many cases of familial genetic information.

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