Abstract
A report from the Presidential Commission for the Study of Bioethical Issues offers several recommendations to help protect the privacy of patients who have whole-genome sequencing.
Scientists, physicians, and ethicists alike agree that current laws and regulations don't offer sufficient privacy protection for the vast amounts of personal data now available through whole-genome sequencing (WGS). To address this issue, the Presidential Commission for the Study of Bioethical Issues recently released a 154-page report, Privacy and Progress in Whole Genome Sequencing, which lays out a number of recommendations to improve present practices.
The report recommends strong protection of whole-genome data and data security while maintaining data-sharing opportunities to advance research. A primary facet of these protections focuses on individuals, who should be assured that medical professionals will consider their needs. To that end, the commission advises “robust and understandable informed consent procedures,” noting that WGS findings will likely reveal information that has implications for the future health of each patient and his or her relatives.
The second aspect of privacy protection is in information technology, which should be tailored to protect sensitive biomedical information, given the public's concern about identify theft and other forms of information misuse. The final facet is policy-level protection, meaning that institutions should have a system in place for secure handling of WGS data.
Cancer geneticist Charis Eng, MD, PhD, chair and founding director of the Genomic Medicine Institute of the Cleveland Clinic Foundation, praises the discussions around privacy and security detailed in the report. However, she notes that it doesn't specifically address genetic counseling, which is vital when it comes to disclosing sensitive information.
As she points out, genetic information specific to a study's goals is shared with patients. But what about incidental findings? “When we ask patients if they want to know everything, most of them don't,” says Eng. “But if we find something that is life threatening, like a BRCA1 mutation, we are obligated to tell them.” That's the type of information that should be delivered to a patient by a genetic counselor—but kept secure and private from others, says Eng.
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