Prenatal testing and genetics Week 20 Sociology of Human Reproduction

Recap Considered the family as a social construction Considered the concept of ‘good motherhood’ and stigma associated with teenage pregnancy Considered pregnancy and breastfeeding

Outline Look at the issue of prenatal screening during pregnancy Consider the interrelationship between medical technologies and social understandings Considered disability rights critique

Introduction to Testing Many forms of testing around reproduction Tests prior to conception (genetic counselling) Tests on developing embryos (PGD) Tests during pregnancy (antenatal care)

Tests prior to pregnancy Genetic Carrier Testing looks at inherited conditions Cystic Fibrosis Linked to a faulty gene, if both parents carriers ¼ chance of baby with CF Huntington's Disease Linked to a faulty gene, each child has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. Breast cancer ‘Cancer’ genes give a predisposition

Tests prior to pregnancy If parents are identified as carriers, they can use Preimplantation Genetic Diagnosis Following IVF, an embryo is grown until it consists of eight cells. Cell(s) removed/tested and only ‘healthy’ embryos replaced

Tests during pregnancy Antenatal Screening Bblood serum testing, scans Only gives a predictor of risk Prenatal Diagnostic Testing amniocentesis, chorionic villus sampling Gives a definitive answer Carries risk of miscarriage

What do you think about prenatal screening and genetic testing? Is it a benign or problematic process?

Routinisation Testing during pregnancy can be said to be routinised ‘Optional’ tests become everyday practice Screening interrelated with social meaning of scanning

Feminist debates over testing Some feminists argue that increased testing furthers women’s reproductive rights Women are given more control over their pregnancies Women can ‘choose’ to know and make decisions based on the outcome

Feminist debates over testing Others argue that women experience tests as disempowering Furthers the medicalisation of pregnancy Pregnancy becomes ‘tentative’ Social pressures to undergo testing and selective abortion?

Abortion law 1967 Abortion Act Amended in 1990, permits abortion up to 24 weeks Exception ‘substantial risk’ of ‘physical or mental abnormalities’ which would mean ‘serious handicapped’ No definition on what constitutes a ‘serious handicap’

Do you think that prenatal testing could put pressure on women to choose abortion?

Disability Rights Responses Testing is part of the process of discrimination against disabled people Testing to for the right of selective abortion Whose lives are valued Selective termination of disabled foetuses is eugenic

Disability Rights Responses Practices of testing and selective abortion informed by medical model of disability This focuses exclusively on impairment and not on the way in which society creates disability To terminate on basis of impairment is to suggest that it s the only thing worth considering

Disability Rights Responses “Disabled people are under threat for their existence in modern technological societies. Medical science feels able to flex its muscles and power to abolish all life where the unborn foetus may be imperfect or impaired” (Rock, 1996: 112) “The message at the heart of widespread selective abortion…is the greatest insult: some of us are “too flawed” in our very DNA to exist, we are unworthy of being born” (Saxton, 1997: 391)

Disability Rights Response Other disability activities challenge the eugenic position Argue that it is overly simplistic Wishing to prevent impairment is not necessarily an expression of prejudiced attitudes towards disability Ignores the social context in which decisions are made

Do you think that prenatal testing is a form of discrimination against people with disabilities?

Whose choice? Contrasting cases: Whittaker case (UK) Parents wanted to use PGD to screen for an embryo to be a suitable match for a ill sibling Permission was refused (outside legal remit) Widespread public condemnation of the decision Duchesneau & McCullough case (US) Deaf parents used screening to ‘choose’ a deaf child Widespread public condemnation

Pro-choice/ anti-discrimination? Many who question prenatal testing are not anti-abortion Do not want to restrict abortion, but to look at how these issues are considered Question if current social structures ‘force’ women into a particular choice

Summary Genetic and screening technologies are often seen as ‘scientific progress’ The development of technologies linked to societal values and social context ‘Choice’ is rarely a neutral issue