Ethical issues in cancer genetic counseling
Cancer genetic test results are powerful pieces of information that hold life-long implications for clients and their relatives. Thus, it is not surprising that cancer testing programs face an array of ethical challenges, including the disclosure or withholding of certain information to clients; pre-implantation or childhood testing challenges; and concerns about patients’ decisions to be tested or learn results. What constitutes an ethical dilemma? An ethical dilemma is defined as a conflict between two sets of equally important needs or principles. In cancer genetics, an ethical dilemma forces providers and clients to search for the best decision possible in a particular situation. Genetic counselors are skilled at the art of negotiation and compromise, but the resolution of an ethical dilemma often comes down to choosing the lesser of two evils. In this talk, I will describe and discuss six clinical cases that exemplify the types of ethical dilemmas seen in cancer genetics programs. Hopefully, this discussion will be both useful and thought-provoking.
Specific ethical questions to be discussed:
1) To ensure that a positive p53 result goes to at-risk relatives, do we have the right to bypass the deceased patient's spouse?
2) Do we have an obligation to reveal that a client is adopted, which dramatically lowers her risk of carrying the familial MSH2 mutation?
3) Is it acceptable to proceed with testing an intellectually impaired patient despite the question of true informed consent?
4) When concerned about potential suicidality, is it acceptable to actively encourage deferral of a BRCA result known to be positive?
5) Is it acceptable to contact an "anonymous” sperm donor regarding BRCA1/2 testing on behalf of a couple undergoing IVF?
6) Do we have the right to refuse a parental request to have his teenage daughters undergo BRCA1 testing without their knowledge or assent?