Ethics

Question 1

Risks of genome being available to the individual

Answer 1

1. Data might not be accurate: person might make unnecessary changes to life (ex- undergoes mastectomy when not actually at risk for breast cancer
2. Potential for person to misinterpret data
3. Person and/or their family might be negatively impacted by information (ex- person discovers that they have late onset disease, so they commit suicide)
4. Ancestry/family narrative can change (person finds out they aren’t actually from country they thought they were)
5. Changes in decision to have children (ex- both parents carry disease-causing allele)

Question 2

Risks of genome being available online for anyone to access

Answer 2

1. 3rd party access: selling of genomic data without consent (target insurance rates, etc.)
2. Information being used against you (DNA at crime scene, even if person didn’t commit crime, could implicate them)
3. Cannot be de-identified
4. Employment descrimination
5. Eugenic tendencies (denying healthcare, etc. or harassment)
6. No control over who accesses
7. Foundation for prejudice
8. Healthcare could change in undesirable ways
9. Can take DNA from others without their permission to form gametes from it
10. Custom biowarfare
11. End of “anonymous” adoptions

Question 3

Benefits of having healthcare providers having access to genome

Answer 3

1. Targeted drug therapy
2. Less adverse drug events
3. Reduced cost
4. Better preventative care
5. Better diagnostic ability gathered from information from many diverse individuals
6. Choosing better procedures
7. Discover more information on origins of disease

Question 4

Benefits of genome being available for others to access and compare to other genomes

Answer 4

1. More effective research
2. Increase understanding of disease: more variants found
3. Increase understanding of common traits
4. Effect of near universal access changes the policy landscape
5. Increased understanding of environmental factors’ role in disease
6. Make transplants easier: find people who are a close genetic match
7. Possible increase in genetic literacy
8. Finding relationships to others: people who have diseases similar to yours, distant relatives, etc.