19.07.13 legislation related to ethics and genetic testing

Question 1

Where do modern medical ethics stem from

Answer 1

Hippocrates oath= “To do no harm, to do good and keep professional secrecy”

Question 2

Data protection act 2018

Answer 2

• Health related genetic data is regarded as sensitive and should be treated confidentially.
• Data should be accurate and up to date.
• controller should be compliant with GDPR (General Data Protection Regulation)

Question 3

Examples of EU charter of fundamental human rights

Answer 3

• Informed consent

- Discrimination

Question 4

What is GDPR

Answer 4

• General Data Protection Regulation
• Enforced May 2018.
• Aims to improve data sharing across EU, unifying regulation within EU, gives people control over their personal data

Question 5

What does the Council of Europe do

Answer 5

-Give recommendations on the use and protection of genetic data and incidental findings

Question 6

What does the Biomedicine convention limits the use of what test

Answer 6

• Predictive tests.

- May be performed for health or research purposes, subject to appropriate counselling

Question 7

What does the Human Genetics Commission do

Answer 7

• Advises the government on new developments in Genetics and the impacts of this on an individual.
• Social, ethical and legal issues

Question 8

International organization for standardization (ISO) includes standards for

Answer 8

• Ethics (treating all patients equally, patient welfare takes precedence)
• Informed consent
• Confidentiality
• Data protection (all information is stored safely with reasonable safeguards against loss, unauthorised access).

Question 9

What does Genomics England Ethics Advisory Committee do

Answer 9

Defines, examines and responds to the ethical issues in the 100k project