Medical records may be private information, but a patient’s genes belong to the entire family. When facing troubling results of a genetic test that was done either for medical treatment decisions or research purposes, should this information be passed along to the family? Even after the patient dies?
The possibility that new information can come to light is real, even after many years of the collection of the original biological sample, long after individual study participants or patients have died. Should researchers and physicians be allowed to make “passive disclosures” to family members about a genetic mutation that is strongly linked to serious diseases, which potentially could prevent serious harm? Or should they be bound to patients’ preferences for disclosure, including after they die?
What about designer babies, should we be allowed to choose a baby whose genetic make-up is selected in order to eradicate a particular defect, or to ensure that a particular gene is present? This prospect would allow a child suffering from leukemia to have a sibling that is a “perfectly matched” source for blood, bone marrow, stem cells, and all organs for that matter. But when enough is enough for the unaffected sibling? Just bone marrow donations, or should the healthy child also donate her extra kidney?
What about future parents who are deaf selecting a child that carries the mutation that leads to deafness, and conversely avoiding the embryos that would have normal hearing? Is deafness a disease or just an extreme variant of the ability to hear, which leads to adjusted cultural norms that also lead to fulfilling healthy lives?
Discussing these issues and balancing opinions and moral values is the only way we will make progress as a society that respects the rights of an individual at the same time we use the best evidence to treat disease. This event will provide a forum for University of Pittsburgh faculty, staff, and students for debating these issues, using a dynamic format in which each speaker will give a short presentation and a panel will be formed to answer questions from the audience.
This event is also sponsored by the School of Dental Medicine. For more information, please contact Alexandre Vieira at firstname.lastname@example.org.