Group 2:Research methods, experimenting, laboratory animals, etc

Seminar II: a moral problem

Heda AgicMikael Holm

Froukje PostmaSudarsana Reddy Vanga

Joran Martijn

Should we sequence everybody’s genome?

≈ $5000 per human genome in July 2014

Illumina X10 system:Breaks the $1000 per human genome barrier

http://www.illumina.com

≈ $2.7 billion in 2000 (total cost Human Genome Project)

An ethical problem

Potential benefits

Personalized medicine

Accelerate medical research

Better understanding human evolution

Potential problems

(Insurance) companies may discriminate people

Should we screen newborns and children?

Eugenics

Impairment of privacy

Overall health improvement Risk of misusage / exploitation

Alternatives?

• Privacy – sequence only the people who give consent

• Do not do it at all (but then no benefit)

Impact

• Who is affected?- Humanity: everyone, even the people who were not sequenced- Organisations involved with health care as well as lawmakers

• Who has a stake in it?- Researchers (wealth of data will benefit research)- Pharmaceutical industry (personalized medicine)- Families with genetic disease history- Insurance companies (raise premiums for people with health risks

based one sequence data)- Minority groups (negative stake; potential misuse by racists etc.)

Values, interests etc

Privacy, the right to control information about oneself

Personal choice, do children get to decide, how do you opt out?

Control of information, should the government or similar organisations know these things

Some solutions

One obvious one is to make the data anonymous, but does this really help?

Legislation can solve some problems, but of course it can primarily punish abuse after it hasalready happened