Luncheon Roundtables
Melissa Russo, MD (she/her/hers)
Assistant Professor, Obstetrics and Gynecology
Alpert Medical School of Brown University and Women & Infants Hospital of Rhode Island
Providence, Rhode Island, United States
Christian Parobek, MD, PhD
Fellow
Baylor College of Medicine
Houston, Texas, United States
Adam Lewkowitz, MD, MPHS
Assistant Professor
Alpert Medical School of Brown University and Women & Infants Hospital of Rhode Island
Providence, Rhode Island, United States
Expanding genomic capabilities have dramatically increased the genetic testing options available to pregnant patients. Terabases of identifiable prenatal genetic information (from cell-free DNA, carrier screening, and prenatal exomes) are processed each year by laboratories, and these data may be used for non-clinical purposes. This interactive session will introduce privacy concerns and non-clinical uses of prenatal genetic information by laboratories and, discuss potential avenues to increase patient autonomy in the use of their genetic information. We will discuss results from our systematic review of commercial laboratories’ use and sharing practices for prenatal genetic information and results from randomized controlled trial to determine whether education about genetic privacy laws influences patient attitudes regarding the use of their genetic data for non-clinical purposes. We found that most laboratories use identifiable maternal and fetal genetic data for research or share this data with third parties. We discovered that patients are unaware of these practices, and this may be related to the college-level language of consent forms as well as inadequate state laws regulating consent for use of genetic data. When given the choice, many pregnant patients do not want their genetic information to be used for non-clinical purposes, even after education about genetic privacy protections.
During this session, participants will consider the practical, legal, ethical issues that arise during the collection, use and sharing of prenatal genetic data. Participants will learn how to critically examine laboratories’ genetic privacy policies to choose tests that meet their patients’ privacy needs. This session is designed for any maternal fetal medicine or obstetric provider who is ordering prenatal genetic testing with a desire to help patients navigate privacy concerns in the genomic age. This roundtable supports many pillars of the SMFM Strategic Initiative. First, we will center our discussion on increasing knowledge, education, and research on a novel yet important topic: perinatal genetic privacy with cell-free DNA. Second, we will emphasize the role of advocacy with industry partners, as the commercial labs that create the lab tests have the power to be more transparent about genetic privacy implications. Lastly, we will also discuss how the nationwide shortage of genetic counselors disproportionately reduces access of low-income or minority women to receive appropriate counseling on the implications of cell-free DNA in general and pertaining to privacy.
After this session, attendees will be equipped with practical tips and skills to be able to work with data engineers, analysts, and application specialists to create or implement technological interventions in their own programs and institutions.