When Rights Conflict

Posted by Tom Fuller in AnonymitY, Blindside project, Humanity nature and activity, psychology at August 8th, 2007

Welcome to those few of you who are not adorning a beach somewhere, and I offer my commiseration. Let’s try to entertain you by persuading you to resolve a dilemma involving rights to information and privacy. My challenge to you is, not only do you have to decide who has the right, but to devise more real world scenarios that bring these new issues and old rights together in conflict. Attend:

You are an individual of mixed race, both races minority (for convenience think Asian and African). You can pass as full-blooded in either race and often do. You have a child or children from a previous relationship. And you are ill.

As part of your treatment you need genetic analysis of predisposition towards several disease pathways. You are frightened that exposure of the results will a) reveal your mixed race heritage and b) prejudice your employability, insurability and sociability. So you agree with your consultant to test under an alias. And your treatment proceeds and you get on with your life.

Unbeknownst to you (does Beyonce have an evil twin called UnBeyonce?), your consultant also treats your child/children from a previous relationship, and recognizes that your genetic results are relevant to them. Your consultant knows that you would refuse to release your information, but their continued good health is dependent on having this information available. Just for the sake of preserving the moral dilemma, getting the genetic information from the children is not adequate, sufficient or practical (they live now in a foreign country, or something like that).

1. Is your right to control of information regarding your genetic history absolute?
2. Does your consultant have ethical responsibilities to act despite your desire for secrecy?
3. If sperm donors are required to disclose identity to their children, is a precedent established for requiring you to yield your genetic information?
4. Who should make the final decision?

Extra points for better dilemmas in the comments.

2 Responses to “When Rights Conflict”

  1. Ian Brown Says:

    1. Yes
    2. No
    3. No
    4. The patient

  2. David French Says:

    With local health authorities taking a generous approach to information sharing citing “common good” but more likely for administrative convenience (see Patients’ privacy could be compromised by health b…), the opportunity to consider cases like the one presented will be swept aside.

    My view … 1. Yes ; 2. No, not outside the individual patient - carer relationship ; 3. Probably, in a legal sense. This is a bad thing! Genetic information is probably the ultimate in “identity” information; 4. The patient fully informed by consultant.

    http://davethinkingaloud.blogspot.com/2007/08/health-information-privacy-when-rights.html

Leave a Reply

Contributors to the Blindside wiki and blog should note their input forms part of a collaborative resource that is Creative Commons (by-sa 2.5) licensed. We hope these resources will be reused and remixed in the public interest. You do not need to seek permission before you re-use our works, although we do require that users attribute Blindside as their source, and license the resulting work under the same terms.