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Who has a claim to information that’s been deciphered from your DNA? And what happens to your genetic profile after you’re gone?
New forms of genetic testing can predict whether a couple will have a child with cystic fibrosis, guide doctors in selecting the most effective chemotherapy for a breast cancer patient, and help researchers unlock the causes of Alzheimer’s disease. While these advances have the potential to save lives and transform medical research, they also raise serious ethical questions about the balance between privacy and health – questions that scientists, bioethicists, patients, and families are just beginning to confront.
Does someone have a right to know if their aunt has a genetic condition they might also have inherited, even if she wants to keep it private? What obligation does the aunt, or the doctor who treats her, have to share this information with relatives who might be at risk? If the aunt passes away, who decides how her genetic information should be shared after her death?
At the heart of these ethical debates is a question about the ownership of our genes. In a recent survey by Mayo Clinic epidemiologist Gloria Petersen, University of Minnesota legal scholar Susan Wolf, and UC San Francisco bioethicist Barbara Koenig, 60% of people said that genetic information belongs not just to an individual, but also to all his or her blood relatives.
Read full, original post: Who Owns Your Genes?