Ethical Issues of Genetic Testing: Biomedical Ethicist Amy Lynn McGuire Covers Modern Concerns

This podcast explores how readily available genomic testing and databases of human genetic information raise ethical concerns. Dr. McGuire discusses

• How information from direct-to-consumer genetic testing can be used and what to look out for,
• Where different lines of concern lie between genomic testing that prevents or treats disease and potential uses that are less clear, and
• What direction trends for the next few years are heading in the biomedical ethicist world while facing a pandemic.

Dr. McGuire is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She specializes in ethical issues of genetic testing and genomic research. Modern technologies and commercialization put human genetic information at the forefront of medical ethics revolving around multiple health issues. For example, she begins the conversation by addressing gene editing, which has brought a lot of attention: it offers great promise, but also raises ethical concerns about how we influence nature.

She also discusses privacy issues from direct-to-consumer genetic testing and genealogy information. She advises listeners to use caution and understand that who can access the information depends on the company you are using. She reviews different company policies but also the ways the fine print may include provisions the consumer can miss. Ultimately, these companies have created a business model to amass this data and sell it to pharmaceutical companies to develop health initiatives like new drugs.

She talks about the extent to which HIPA and GINA, a newer suite of laws that directly address genomic research and human genetic testing information, meet the needs for protection yet could be tightened. She also brings up newer technologies and reproduction issues, some mass testing programs, and how balancing competing health issues with a global health emergency is a rising issue.

For more, follow the work of the American Society for Bioethics and Humanities and see the web site for the Center for Medical Ethics and Health Policy at Baylor Medicine at https://www.bcm.edu/centers/medical-ethics-and-health-policy.