genetics as a form of identity and affiliation recognizing the need for privacy
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Genetics as a form of identity and affiliation? Recognizing the need for privacy. Katharina Liebsch , Hamburg. Point of interest : Sociology of every-day communication. What is the meaning of Genetics for so called ordinary people?

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genetics as a form of identity and affiliation recognizing the need for privacy

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

Katharina Liebsch, Hamburg

point of interest sociology of every day communication
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.
social institutional and normative contexts of genetics in germany
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
legal frame genetic diagnosis act 2010
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.
genetic realities
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.

example genetic reality of cystic fibrosis
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?

genetic information of cystic fibrosis
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.
enacting genetic information of cystic fibrosis
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.
genetic c ounselling the v isitor s perspective
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.
genetic counselling the visitor s perspective
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).
genetic counselling the visitor s perspective1
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.
to adress to the new naming
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“.

changing the s pace of possibilities of personhood
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.
changing the space of possibilities of personhood
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.
genetic knowledge and it s complexities and ambivalences
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.
privacy as realm to reflect upon one s own
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.
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