Challenges in genetic testing

Published on February 24, 2021   34 min

Other Talks in the Series: Introduction to Human Genetics and Genomics

My name is Heather Hanson Pierce. I'm a Principle Genetic Counselor and Education and Training Lead in the Clinical Genetics Department, Addenbrooke's NHS Trust. Today, I'd like to talk about challenges in genetic testing.
What I'd like to cover in the presentation today is why is genetic testing so challenging, to have a review of ethical principles used in looking at genetic counseling challenges, ethical issues in genetic testing that arise, to look through some scenarios and ethical dilemmas, and also to give an approach for how to approach ethical challenges in genetic testing.
Why is genetic testing so challenging? What we often get asked is, isn't it just a blood test? Well, one of the reasons it's challenging is because genetic testing not only affects the individual in front of you, but also the family members as well. Genetic testing can diagnose an existing medical condition, but can also predict future risk of medical problems. Several different ethical issues can occur in the same family, so you may have to juggle different priorities even within the same family. Also, the advances in genomics, while great in terms of diagnosis, are also creating ethical questions that never existed before.
The ethical issues in genetic testing are largely centered around consent and confidentiality. Examples of ethical issues that arise in genetics are centered around things like non-disclosure of genetic information, indirect testing, testing in children, reproductive decision-making, and ownership of genetic information.