Genetics as a form of identity and affiliation? Recognizing the need for privacy

1. Genetics as a form of identity and affiliation?Recognizing the need for privacy Katharina Liebsch, Hamburg

2. Point of interest: Sociology of every-daycommunication • What is the meaning of Genetics for so called ordinary people? • How do people understand genetic information? How do they adjust to it? • Using empirical data of micro level every day-communication- within families,- with insurances,- at the workplace and- in communication between doctors andpatients.

3. Social, institutional and normative contexts of Genetics in Germany Field of Medicine: • offers health insurance for all citizens based on a system of contributory financing for the majority of citizens. • Most hospitals and medical offices are run as private enterprises which are strictly regulated by governmental laws that • demand rights of equal treatment and freedom of doctor’s choice. • Ethics: - idea of tolerance towards people who are ill, - claim to grant an autonomous life for people being sick or disabled. • Genetics have always been a point at issue:- Political and ethical debates on advantages and dangers of genetic knowledge

4. Legal frame: Genetic Diagnosis Act 2010 • administers the use of genetic information, • introduces genetic education and genetic counselling in the procedure of genetic tests and prenatal genetic check-ups, • aims at guaranteeing a right of informational self-determination, • aims at providing protection against genetic discrimination.

5. Genetic ‚realities‘ • Cultural contexts, societal regulations and the handling of genetic information by individuals. • The category “Genetic” becomes significant and important through two vectors: 1. Labelling from above, from a community of experts (scientists, legal experts and politicians) 2. behaviorof the person labelled as being “genetically at risk”, which presses from below.

6. Example: Genetic ‘reality’ of Cystic Fibrosis Cystic Fibrosis (CF) is most common among Caucasians: • In the European Union: 1 : 2000 – 3000, • In AfricaCF: 1: 17.000, • In Asia: 1: 90.000. But:Beyondit’sethnicspecificity, CF points to a characteristic of manyforms of geneticdisorders: How to deal withtheconditionalprobability of thegeneticknowledge?

7. Genetic information of Cystic Fibrosis Symptoms • Difficultybreathing • lung- and sinusinfections • poorgrowth • infertility. Cause • mutationin thegenefortheproteincysticfibrosistransmembraneconductanceregulator (CFTR), locatedat chromosome No 7 • recessive nature of thedisorder • mutationDelta F508 accountsfortwo-thirds of CF cases • over1500 othermutationsthatcanproduce CF.

8. Enacting genetic information of Cystic Fibrosis Interview-Studywithparents • whoeitherknowabouttheirstatus of carryingthemutation • orwhoareworriedabouthaving a sickchildbecause CF appeared in theextendedfamilycircle. Reports on: • Becoming a „person at risk“ and howthischangedtheirself-perception and their private and intimate life. • 2 institutionsorganizethispassage:- GeneticCounselling- Pregnancycounsellingofferingspecialprenataldiagnostics.

9. GeneticCounselling: thevisitor’sperspective Theexample of Mr. and Mrs. Jahn: • parentsof a healthydaughter • sisterof Mrs. Jahn’sgavebirth to a baby thatdieddue to CF at the age of sixmonths Theirpersonal riskevaluation: • Mrs. Jahn: 1:2 to be a carrier • Mr. Jahn: 1:25 to be a carrier • 1:4 to pass it on to thechild • 1:200 to have a childwith CF.

10. GeneticCounselling: thevisitor’sperspective Offeringa geneticdiagnosis: • gene-testdetectsaround 70% of mutations, • wouldhelp to raiseor to minimizethe personal riskevaluation of Mrs. and Mr. Jahn. • Cannotpredictthedegree of severity of thechild’sillness- Some die withinthe a fewyears,- othergrow up quite normal and realize as adultsthattheyarenotable to conceivechildren,- othersareveryweak and in theneed of medicalcareduring all theirlife).

11. GeneticCounselling: thevisitor’sperspective „Puzzlingexperience“ brougt up concerns: • Whatistheprobabilisticbenefit of thenewgeneticinformation? • Doctorstreatindividuals, Geneticistsdo riskcalculation on populationalscale: Howdoesthis fit together? • Feeling an emphasis to getactivenotknowingwhatconsequencesto draw. • Feeling theneed to fit a newcategory. • to respond to thenewnotion of geneticresponsibilityafterfinding out about Mrs. Jahn’scarrierstatus.

12. To adress to thenewnaming One half of theparentsinterviewed • planneda non-mediatedpregnancy, willing to riskhaving an affectedchild, • referred to a moralframeworkthatvaluesactiveparenthood and honoursdifferences:Mrs. Jahn:„And as far as I am concerned, a childwith a disabilityis no less of a worthyperson to live“ . „Wedecidedthatit was importantforourdaughter to have a sibling, regardless, so thattheywouldhaveeachother. That’skind of howwelooked at it. So wedecided to do that“.

13. Changingthespaceof possibilities of personhood Twogroups of parentsinterviewed: • Knowingabouttheirrisk-status and continuingto havechildren • Framework offamilyvalues to extendbeyondriskcalculations of transmitting a geneticdisorder • Advocatingforlove and appreciation of childrenregardless of theirgeneticstatus • heighteningawareness of theirownparentingstrengthand limits.

14. Changingthespace of possibilities of personhood • To stopreproducingwhentheyfound out abouttheircarrierstatus • Limitingtheinvisionedfamily and familyplans as „duty“ and „responsibility“, • Managingtheowngenetically-at-riskstatusisaccompaniedbycomplicatedtensions: - feelingsad, - beingnotable to put up withtheamount of workthatcomesalongwithhaving a CF-child, - decision to selectagainstchildrenliketheonestheyalreadyhad- sense of beingcensured and criticisediftheypassed on a geneknownto cause a severedisease- uneaseaboutthepossiblesocietalconsequences of such genetictesting-basedchoiceover time.

15. Genetic knowledge and it’s complexities and ambivalences Reports illustrate • complexities, contradictions and ambivalences embedded in the experiences of undergoing genetic testing, genetic counselling and reproductive decisions. • Reproduction is not a straightforward decision based on circumscribed notions of genetic risk and genetic responsibility, but involves a complex negotiation of personal desires, family values and diversity as well as familial work capacities. • To pass on a genetic disorder depends on values, personal likes and dislikes as well as abilities.

16. Privacy as realm to reflectuponone‘sown Dealing with genetic and ethnic information: • Differences of the every day handling of people need to be acknowledged. • Recognizing and granting privacy, a realm in which the distinctiveness of being a person genetically at-risk (or ethnically specified) may live comfortably.

17. Thankyouforlistening!