#349 Ethical Dilemmas in Genetic Testing...

Bioethicist Dr. Madison Kilbride is interviewed by Sarah Lawrence College genetic counseling student Shaun Miller. This is part of Shaun’s internship with DNA Today. 

At the University of Utah, Madison Kilbride is Assistant Professor of Philosophy specializing in bioethics. Her research focuses on ethical implications of genetic testing, particularly direct-to-consumer (DTC) genetic testing, genetic privacy, and family obligations around genetic information. Her work has been published in top journals, including Journal of American Medical Association, Journal of Clinical Oncology, Hastings Center Report, the American Journal of Bioethics, and the Journal of Medical Ethics. From the ethical limits of DTC genetic testing to the complexities of breaching confidentiality to warn at-risk relatives, in this episode Dr. Kilbride dives into some of the most pressing debates in modern medical ethics.

In this conversation, we explore:

• Why Dr. Kilbride, a philosopher by training, was drawn to ethical issues in genetics
• How direct-to-consumer (DTC) genetic testing has evolved, and the “Goldilocks problem” of too-narrow vs. too-broad test panels
• What consumers misunderstand about the limitations of tests like 23andMe’s 3-variant BRCA screen
• Dr. Kilbride’s personal experience with a variant reclassification and the ethical duty of testing companies in communicating critical updates
• The “principle of rescue” as an ethical framework for when patients should share genetic results with family members
• Whether patients have a moral duty to get tested in the first place — particularly if family members might benefit
• Ethical implications of sharing information about non-Mendelian or multifactorial traits like autism or diabetes
• Pushback against the idea that genetic data is “inherently familial,” and why this philosophical distinction matters
• When (if ever) healthcare providers should breach patient confidentiality to warn relatives at risk of a genetic condition
• Ethical criteria for deciding whether breaching confidentiality is justified
• Why insurance companies should treat IVF with preimplantation genetic testing (PGT) as medically necessary
• How IVF-with-PGT compares to preventive care models like cancer screening
• Advice for genetic counselors navigating family disclosure and autonomy tensions
• Predictions for the future of genetic testing and what ethical frameworks need to evolve now

Mentioned Articles by Dr. Kilbride:

Dr. Kilbride shares insights from her recent peer-reviewed publications, highlighting the importance of balancing patient autonomy with broader familial and societal responsibilities in genetics.

• On the limits and need to improve DTC testing:
  • "The Need to Improve the Clinical Utility of Direct-to-Consumer Genetic Tests: Either Too Narrow or Too Broad" JAMA 2020
  • "Ethical Implications of Direct-to-Consumer Hereditary Cancer Tests" JAMA Oncol 2018
  • "Evaluating Web-Based Direct-to-Consumer Genetic Tests for Cancer Susceptibility" ASCO 2020
• On the principle of rescue and duty to warn family members:
  • "Genetic Privacy, Disease Prevention, and the Principle of Rescue" Hasting Cent Rep 2018
• On breaching patient confidentiality under ethical conditions:
  • "Breaching Confidentiality in Genetic and Non-Genetic Cases: Two Problematic Distinctions"  AJOB 2024
• On expanding insurance coverage for IVF with PGT:
  • “In vitro fertilisation with preimplantation genetic testing: the need for expanded insurance coverage" J Med Ethics 2020

Want to read even more from Dr. Kilbride? Search her full list of publications on PubMed here.

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