Genomic Testing

As genome sequencing of patients becomes more common, ethical questions have begun to surround the collecting and reporting of the information garnered from testing. In a 2016 article, Burke addresses a case in which one of a pair of monozygotic twins had her genome sequenced against the wishes of her twin sister. While the twin was legally fully able to make this decision, her choice raised ethical questions about what, if anything, her twin sister ought to be told of the results of the testing in spite of her lack of consent preceding the sequencing (Burke). In a second case, as written by Parker and Lucassen, a patient has her genome sequenced to find that she was a carrier of a mutation causing a serious disease. The patient’s sister was pregnant and a patient at the same practice, but the sisters were not close and held opposing beliefs in how they would handle learning their fetus had a serious condition (Parker & Lucassen 2004). In light of this, the patient stated that she did not want her sister to be informed of the results. In circumstances similar to this, the authors suggest the use of a joint account model for decision making which calls for the sharing of the results of genetic testing with those the information would impact except in extraordinary circumstances. Disclosure of this policy would be essential information to included in informed consent materials for the patient undergoing testing to ensure that they understand that the information uncovered would not remain confidential.

Burke, Wylie. "Commentary to “My Identical Twin Sequenced Our Genome”: Cautionary Genomics." (2016): 1-2.

Parker, Michael, and Anneke M Lucassen. “Genetic Information: A Joint Account?” BMJ : British Medical Journal 329.7458 (2004): 165–167. Print.