Group 2: Research methods, experimenting, laboratory animals, etc Seminar II: a moral problem Heda Agic Mikael Holm Froukje Postma Sudarsana Reddy Vanga.

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Presentation transcript:

Group 2: Research methods, experimenting, laboratory animals, etc Seminar II: a moral problem Heda Agic Mikael Holm Froukje Postma Sudarsana 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 ≈ $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 improvementRisk 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 has already happened