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  • Genetics and Confidentiality
  • Dan W. Brock (bio)

David Doukas and Jessica Berg's (2001) proposal for the use of a family covenant in genetic testing has promise in helping ensure that genetic information with important consequences for family members will get to those family members and not remain confidential with the patient. However, I believe their proposal does not go far enough. Among its limitations are that it relies on a voluntary agreement between involved parties, allows the parties to withdraw from the covenant after it has been made, and focuses on cases in which primary care physicians treat more than one family member. Thus, while the family covenant would stimulate the discussion about what will be done with the results of genetic testing in advance of that testing and then often get those results to affected family members, in many cases confidentiality of medical information may still prevent information from being transmitted. The family covenant relies on the patient's voluntary agreement to provide family members information that seriously affects their well-being or reproductive decisions, but the more fundamental question is whether that agreement is morally required. I believe it is not, but to see why that is so we need to ask what moral reasons support the practice of medical confidentiality.

One moral support of medical confidentiality is that either individual physicians or the norms of the medical profession promise confidentiality, either explicitly or implicitly, to patients. However, this reason provides no support for making the promise in the first place; if confidentiality should not be promised for all genetic information, we could not do so. Another moral support is the bad consequences that often befall a patient when sensitive medical information is released to others. The general point is that there are usually good consequences from maintaining confidentiality and bad consequences from breaching it. However, when failure to obtain genetic information will have serious adverse impacts on a family member's well-being or reproductive choices, the consequences of maintaining confidentiality are usually worse, not better, than breaching it; this seems true in the three cases that Doukas and Berg cite. Another assumption that I believe underlies and supports the general practice of medical confidentiality is that medical information is first and foremost about the patient, and so the patient has the greatest interest in that information and in controlling who has access to it. But of course the key feature of genetic information is that it is typically information about a family, or even, as Doukas and Berg note, about a larger community, not just about an individual patient. The only important moral reason that clearly supports confiden- tiality in these cases is that the information has been gathered with the patient's cooperation and consent, and so the patient has a right to that information. The question is how strong a right this implies to control who has access to the genetic information in the face of serious harmful consequences to the well-being or reproductive choices of family members who do not also get the information. I do not believe that the fact that information is obtained (for example) by running genetic tests on blood drawn from a patient has enough moral weight to override the serious harmful consequences not obtaining that information may have on family members.

It could be argued, on the contrary, that consequentialist considerations support maintaining strict confidentiality of genetic information. If patients know that their confidentiality will be breached in certain circumstances, they may forego genetic testing in order to avoid that possibility. But if they forego testing in order to avoid possible breaches of their confidentiality, physicians or others will never have the opportunity of persuading them to provide the information to others. The net effect of qualifying the requirement of confidentiality might be that important genetic information would be less frequently provided to affected family members. This is a speculative argument about which we lack the necessary data. However, it is worth noting that it is directly analogous to an argument that was made for strictly maintaining [End Page 34] the confidentiality of the results of a patient's HIV tests, even when there were persons...

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