‘Choice or eugenics? Past and future cultures of prenatal surveillance and selection’

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Prenatal diagnosis and termination of pregnancy began as a reform eugenics project of the post-war decades to release families from the burden of having children with inherited diseases. Later in the new culture of choice, screening as well as an even wider range of diagnostic tests was introduced. Today routine antenatal care is a ‘structured pathway’ comprising numerous visits to GP, midwife or clinic at specified times during the pregnancy. These involve genetic screening tests and ultrasound scans. Women identified at risk of fetal abnormality are referred for diagnostic testing by CVS or amniocentesis.

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‘Choice or eugenics? Past and future cultures of prenatal surveillance and selection’

  1. 1. Choosing children: cultures of prenatal surveillance and selection Martin Richards Centre for Family Research University of Cambridge [email_address]
  2. 2. Antenatal care <ul><li>A structured pathway of medical surveillance involving GP, clinic and midwife. </li></ul><ul><li>Aims to safeguard the health of mother and fetus/baby. </li></ul><ul><li>Near universal uptake. </li></ul><ul><li>But other strands. Classes and..... </li></ul>
  3. 3. Prenatal fetal screening and diagnosis <ul><li>Screening. e.g. 11 week scan for dating and nuchal fold screening. </li></ul><ul><li>Diagnosis </li></ul><ul><li>1) for positive screens </li></ul><ul><li>2) those known to be at risk, e.g. </li></ul><ul><li>carriers of recessive genetic </li></ul><ul><li>conditions – cystic fibrosis. </li></ul><ul><li>Termination of pregnancy. </li></ul><ul><li>IVF. Preimplantation screening and diagnosis </li></ul>
  4. 4. A little history <ul><li>1946 first genetic clinic. Hospital for Sick Children GOS. </li></ul><ul><li>Recurrence risk for couples with children with serious disorders. </li></ul><ul><li>Most “took responsible decisions on the basis of the information”. </li></ul>
  5. 5. A follow-up study <ul><li>1952 to 1964, 455 couples seen. </li></ul><ul><li>High recurrence risks – two thirds deterred (N=109) from planning further children. </li></ul><ul><li>Adoption (23), AID (2), sterilisation (19), termination of unplanned pregnancies (8), divorce and separation (4). 20 unplanned births, 2 affected children. </li></ul><ul><li>Undeterred high risk – 61 couples. 74 births of which 15 affected. </li></ul>
  6. 6. Aims of clinic <ul><li>A service to individual couples. </li></ul><ul><li>Knowledge of risks, where treatable, early diagnosis and treatment. </li></ul><ul><li>Reduce the proportion of children born with serious genetically determined handicap. </li></ul><ul><li>Little contribution to community health – need carrier detection and prenatal diagnosis and termination. </li></ul>
  7. 7. The end of eugenics <ul><li>From belief in self-sacrifice for the common reproductive good (Diane Paul). </li></ul><ul><li>To individualist reproductive autonomy. </li></ul><ul><li>An end of the genetic clinic or a rebirth in the culture of choice. </li></ul>
  8. 8. Today. The new technologies of screening and diagnosis. <ul><li>Ultrasound late 1970s. </li></ul><ul><li>2/3 had a dating scan at 11 weeks. (Oakley: From Here to Maternity). </li></ul><ul><li>Ultrasound 2009. </li></ul><ul><li>All at 11 weeks – dating and nuchal fold screening. </li></ul><ul><li>And at 22 weeks screening for birth defects, ‘anomaly’ scan. </li></ul><ul><li>Plus 1/3 private scans – better quality, more convenience, reassurance, images to keep. </li></ul><ul><li>(Oakley, Wiggins, Strange, Sawtell and Austerberry, 2010) </li></ul>
  9. 9. Technologies drive choice? <ul><li>Screening programmes for recessive conditions carriers – Tay Sachs disease, Thalasaemia, Sickle cell, Cystic fibrosis. </li></ul><ul><li>Many new DNA diagnostic tests. </li></ul><ul><li>“ Counsyl” screens for common mutations in over 100 genes related to recessive conditions (affect 1 in 208 live births. </li></ul><ul><li>Non-invasive tests based on maternal blood using fetal DNA sex and Mendelian conditions. </li></ul><ul><li>.SNIPs and genome sequencing. </li></ul><ul><li>Pre-implantation diagnosis – embryo selection. </li></ul>
  10. 10. Limits to choice? <ul><li>Free choice ? </li></ul><ul><li>A new eugenics? </li></ul><ul><li>The disabilities critique. </li></ul><ul><li>The deaf community </li></ul><ul><li>- avoid genetic clinics and screening </li></ul><ul><li>- no positive choice for embryos. </li></ul><ul><li>HFEA Act. </li></ul>
  11. 11. Families with those with intellectual disorders <ul><li>Engage in gene hunting study. </li></ul><ul><li>Want a diagnosis/name for condition. </li></ul><ul><li>Provide care for those with ID but want reproductive choice for other family members – prenatal diagnosis and termination. </li></ul>
  12. 12. Limits – no sex selection? <ul><li>Can’t use PND or PGD. </li></ul><ul><li>But have genetic test kits or ultrasound and termination. </li></ul><ul><li>Travel to overseas clinics. </li></ul>
  13. 13. Conclusions <ul><li>Scanning and genetic choice. </li></ul><ul><li>New genome wide tests – selection on genetic profile of fetus? </li></ul><ul><li>Choice through partner choice, termination or IVF , embryo selection and gene therapy. </li></ul>

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