In a recent webinar hosted by Lindsey Wahlstrom-Edwards, Partnerships Lead at Sano Genetics, expert speakers explored the complexities of genetic testing and its ethical considerations, particularly in relation to patient care, public health programs, and data privacy. What follows is a recap on “Precision medicine ethics: Navigating genetic screening with care.”
Erica Barnes
Erica Barnes is the Executive Director of the Minnesota Rare Disease Advisory Council. She leads the council's efforts to improve care for the rare disease community in Minnesota by advising the state on policy and programs that enhance healthcare outcomes for individuals with rare conditions.
Molly McGinniss serves as the Senior Director of Client and Partner Relations for Population Genomics at Genome Medical. She brings her expertise as a genetic counselor to help bridge the gap between genomic data and patient care, ensuring patients have access to genetic counseling and precision medicine.
Jean Swidler is the Executive Director of End the Legacy, a patient advocacy group focused on individuals impacted by inherited ALS and frontotemporal dementia. As an asymptomatic carrier of a genetic mutation related to these conditions, Jean provides a unique and personal perspective on genetic testing and patient advocacy.
CEO of People with Empathy and Committee Member for the Partnership for Quality Measurement, Christine von Raesfeld is a leading patient advocate who draws on her personal journey of living with undiagnosed chronic conditions. She is passionate about advancing patient voices in genomic research and healthcare.
Key topics in genetic testing
The webinar kicked off with an overview of genetic testing from Lindsey, who explained various types of genetic testing, such as single-gene panels, whole-genome sequencing, and pharmacogenomic testing. This set the stage for the expert panelists to dive deeper into the ethical and practical challenges of these technologies.
Ethical considerations in newborn screening and genetic testing
Erica Barnes discussed the critical role of genetic testing in newborn screening programs, particularly for rare diseases, which are often diagnosed too late. She outlined the importance of reducing the diagnostic odyssey for patients and highlighted the ethical challenges around equitable access to these programs, as well as concerns around data storage and privacy.
Patient empowerment through genetic data
Christine von Raesfeld shared her personal experience with pharmacogenomic testing, emphasizing the importance of patient access to their genetic data. She discussed the ethical implications of data privacy, transparency, and patient consent, advocating for stronger security measures and incentives to encourage patient participation in genetic research.
Privacy, policy, and the future of genetic non-discrimination laws
Jean Swidler explored the legal landscape of genetic privacy, stressing the need for expanded protections against genetic discrimination. She referenced the Genetic Information Nondiscrimination Act (GINA) and recent laws in states like Florida, urging for greater empowerment of individuals to use their genetic data without fear of repercussions.
Genetic counseling: A lifelong process
Molly McGinniss highlighted the vital role genetic counselors play in guiding patients through their healthcare decisions. She stressed that genetic counseling is not a one-time service but a continuous process as patients encounter new challenges and questions throughout their lives. Molly also noted the increasing complexity of genetic testing and the growing need for accessible genetic counseling services to address patient concerns and inform decision-making.
This webinar provided a comprehensive exploration of the ethical considerations in precision medicine, with a focus on the evolving role of genetic testing in patient care. The panelists emphasized the need for patient empowerment, equitable access to genetic testing, and robust data privacy measures to ensure the ethical progression of precision medicine. Their collective insights shed light on both the challenges and the potential of genetic research to transform healthcare.
For more, watch the full webinar: