Ethical Implications of Genetic Sequencing Service

1. Group 5 Agnès Sjöstrand Nicklas Ekebom Martin Johansson

2. Presentation of technology A company has developed a service which will modify the genetic sequence of the fertilized human embryo. The service aims to change disease associated alleles and thereby decrease the genetic risk associated with development of Schizophrenia, Bipolar Disorder, Autism and Alzheimer´s disease.

3. Groups concerned + conflicts they will have • Groups concerned + conflicts they will have • Everyone • Parents → users/non-users, non-users/society: social pressure. • Health system (welfare, doctors, insurances) → health syst/parents: • pressure to proceed, health system/everyone: insurance prices going up depending on user/non-users • child → intrinsic values, child/parents: question their decision they made for him/her • different social classes and different countries → people that have access/people that don't

4. Ethical problem led by the technology Will non-users still be covered by healthcare? Would they have increased insurance costs? International laws: what would be the rights of people that have gone through this technology abroad (family, children...)? What is the ethical state of the foetus? Disease carriers would be discriminated against Unknown consequences and risks for society, health, biodiversity, resistance to epidemics.

5. Alternative methods • Improve the medicines and facilities for sick persons • genetic therapy, using viral transfections targeting the cells affected. • Use of stem cells to decrease the symptoms Problems of the alternative methods Medicine and facilities for sick people: park off sick people so we don't have to see them, medicine to avoid disease effects on the society (chemical straitjacket) rather than for the well-being of the patient Genetic therapy and stem cells: would be better but we don't know the risks, especially cancers! Lot of side effects during the treatment.

6. Stake holders and decision making First step: contact researchers to evaluate the risks and whether it would be feasible in the society. Perform surveys to see whether the population would be ready or agree to such technology Society: Shall we vote or make a referendum for such a technology? Foetus: cannot be asked, has no choice

7. Values: health family society: better functioning for all Interest: for insurances and healthcare: less costs (less medicine, fewer employees, less facilities) families: less family troubles, less sadness Duties: information for families, objective keep facilities and medicines so that people can have the choice System permitting parents to make the decision anonymously Prevent stigmatization of people that haven't been through the technology

8. Effects, risks and resolving conflicts • On health • improve it on the short-term • BUT: we don't know all the consequences (other diseases, character) • loss of diversity: what happens in case of an epidemics • On families: • There will be differences between the families that used the technology and the ones that didn't • Non-users will go through social pressure, may feel guilty, the healthcare may be less prone the help them • Other solutions: • Medicine and facilities for sick people: park of sick people so we don't have to see them, medicine to avoid disease effects on the society (chemical straitjacket) rather than for the well-being of the patient • Genetic therapy: would be better but we don't know the risks, especially cancers! It is a harder treatment to go through physically.

9. Optimization of use of technology • Access for everyone, to deal with the equality • Give it a place in the international laws. • Use of the technology: • Restrict its use to disease and nothing else. • Broaden its use to other diseases only once the consequences on neurological diseases have been evaluated. • Restrict its use to disease that can't be cured by medicines. • Protect the families that made the choice not to go through the technology. So that it can remain a choice.

10. State of the art today 23 and Me Ancestry GWAS Studies Personalized Medicine • Intresting sources for reflection • Welcome to GATTACA – 1997, 2008 • Robert Sapolsky – The Baboon troop • The hunt for the superhuman – Research at Beijing Genomic Institute