Lecture 22: Ethics of Medical genetics

Question 1

What is the special nature of genetic information

Answer 1

• It is personal but it may also affect other family members/ future generations
• It may predict future adverse events and affect reproductive decisions

Question 2

What are some of the central ethical issues that arise in medical genetics

Answer 2

• Justice : equitable/ fair access to services but also directive vs non directive counselling
• Confidentiality vs duty to inform relatives of genetic risk
• Assessment of benefits and harms
• Safeguarding of individual/ parental choices
• Full disclosure vs selective disclosure
• Privacy of genetic information from institutional 3rd parties
• medical uses of prenatal diagnosis
• discrimination and stigmatisation

Question 3

What is the difference between confidentiality vs privacy

Answer 3

Confidentiality: Conditions around how information is used and disclosed

Privacy: the ability of the individual to keep health information private - maintaining the dignity of people.

Question 4

When is the right of the individual to confidentiality trumped by the right of protecting public health

Answer 4

Highly transmissable diseases with potential to cause harm to many

Question 5

What are the ethical issues around crispr cas 9

Answer 5

• Safety issues for off target effects and mosaicism in germline editing
• Equity and access
• Slippery slope to non therapeutic enhancement uses
• Informed consent
• Moral, cultural, religious view about research undertaken on human embryo

Question 6

What is a biobank and its purpose

Answer 6

Organised collection of biological material and associated data, which has purpose to see the intersection between genes and the environment.

Question 7

What are the central ethical concerns with Biobanks

Answer 7

• Informed consent- limits of consent
• Confidentiality/ privacy
• Secondary use of samples and data over time- does it need consent
• return of results
• data sharing : who owns it

Question 8

What is Genetic determinism and the purpose

Answer 8

The idea that a persons’ genetic makeup determines the organism but this isn’t completely true, there are other factors that impact the presentation of genes