Question

Genetic counselors use Punnett squares and/or molecular testing to help a person or family understand the probability of inheriting a disorder or of being predisposed to a disorder (carrying the gene). What ethical issues do you think surround this type of self-knowledge?

Answer 1

Considerable debate surrounds the moral and ethical issues regarding persons who have undergone predictive genetic testing. One question of particular interest for this debate is whether or not family members should be informed of the test results. What are the moral obligations of the patient and the physician? Should someone diagnosed with a genetic disorder inform his/her family they may be at risk? Should the physician who has diagnosed the patient inform the family of the disorder and recommend testing? The answers to these questions are not easy and will vary depending on who is asked and what moral theory is used. The answers may also depend on other factors, such as the severity of the disorder.

A physician or a genetic counsellor might offer a clear explanation of the decisions, but nonetheless both would eventually reveal a type of utilitarian reasoning operating in the final decisions being made. The rarer, recessive form of polycystic kidney disease appears in the neonatal period, and, for those who survive, can result in insidious renal failure during childhood. Utilitarian considerations have also formed the basis of prenatal screening protocols for conditions that are likely to result in early childhood fatality or which result in severe or disabling childhood illness.