Page 173 - HA Convention 2016 [Full Version]

Special Topics HOSPITAL AUTHORITY CONVENTION 2016

T13.3 Challenges of Biomedical Ethics in Modern Medicine: 13:15 Theatre 1
From Training to Practice

Am I My Genes?: Challenges in Understanding and Incorporating Genetics into Healthcare

Klitzman R

Psychiatry Department, Columbia University, USA

Genetic testing is rapidly advancing, improving the diagnosis and treatment of numerous diseases, including breast and other
cancers, cystic fibrosis, Alzheimer’s and Huntingtons. But physicians, other healthcare providers, patients, family members,
policy makers and others often face challenges in understanding and knowing how to Incorporate genetic information
into healthcare. These challenges are growing with the rapid development and use of whole genome and whole exome
sequencing, and testing of embryos through Pre-implantation Genetic Diagnosis of fetuses through Non-Invasive Prenatal
Diagnosis. This presentation will explore these challenges and questions, and share how providers, hospitals and healthcare
systems and patients can best respond.

Patients confront a series of quandaries – for instance, whether to be tested, for which conditions; whether to disclose their
genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and
understand themselves and their genetics; what treatments, if any, to pursue; whether, if they are at risk of having a serous
mutation, to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. They struggle
to understand these tests and probabilities, and avoid fatalism, anxiety, despair, and discrimination. Studies show that
providers are often unsure how to address these issues with patients, and feel they need more training in when to order and
how to interpret tests. Healthcare systems face dilemmas about creating biobanks – when to do so, what information should
be included, who should have access to these data, and how concerned to be about possible breaches of confidentiality.
New technologies pose dilemmas as well – e.g., when gene editing through CRISPR-Cas9 or other technologies should be
used.

Underlying ethical dilemmas emerge through these related realms – what risks and benefits are involved, what rights patients
have, and how to ensure that the benefits of genetics are available to all members of society. This presentation will examine
these issues and how they can be best addressed.

Wednesday, 4 May

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