Ethics in Genetic Research

Question 1

Ethics in regards to CDCDWP

Answer 1

• study’s aims and procedures must be explained in plain, understandable language
• P must sign an informed consent form to confirm they understand the study and its potential risks
• privacy can be protected by coding information (limited researcher access) or fully anonymizing the data (no connection to individuals).
  
  • anonymization protects against external parties but can reduce the study’s scientific value by limiting follow-up research
• genetic research may reveal unexpected, potentially distressing information (e.g., misattributed paternity, genetic disorders).
  
  • discovering such information may cause undue stress or fear regarding future health outcomes.

Question 2

Risk to participants

Answer 2

Research in human genetics aims to identify particular genes involved in human behavior - this kind of research may pose risks to participants because of the link between genetic inheritance and the potential for how people live their lives:
* genetic information obtained from such research can also be problematic for the participant’s family
* if misused, genetic information can be stigmatizing and may affect people’s ability to get jobs or insurance

Question 2

Main issues

Answer 2

• genetic research is correlational - should be cautious about drawing definite conclusions regarding disease risk
• ethical neutrality in genetic research, such as the Human Genome Project, is not guaranteed. Historical misuse of genetic data, like in Nazi Germany’s eugenics, shows the potential for future misuse
• research into complex behaviors, such as homosexuality, is controversial due to the social implications and risks of stigmatization and discrimination, especially in homophobic societies
• self fulfilling prophecy
• genetic research is often reductionist, as it does not account for environmental factors.

Question 3

Self-fulfilling prophecy

Answer 3

When a person unknowingly causes a prediction to come true, due to the simple fact that he or she expects it to come true.

Question 4

Genetic determinism

Answer 4

Assume things are not changeable due to the genetics being the only reason for a behaviour