Inheriting Illness part 1: genes, families, and cultural identities

HI269

Week 5

Eugenics and the Family

• “[I]f superior people are desired, they must be bred; and if imbeciles, criminals, paupers and [the] otherwise unfit are undesirable citizens, they must not be bred.” Victoria Woodhull, 1891

• “The freedom of parenthood is … not a license produce seriously defective individuals…” Paul Ramsey, Prof of Religion, 1970

Eugenics, the family and the State

Nature versus nurture: Genetics and the justification of blame in eugenics

Nazism and the death of traditional Eugenics

"This person suffering from hereditary defects costs the community 60,000 Reichsmark during his

lifetime. Fellow Germans, that is your money, too."

Eugenics: Post-war, pre-molecular

• Tainted by Nazism, deterministic concepts of race and eugenics faced strong critique from within biology and medicine, as well as social and political rejection

• BUT: bacteriology and genetics were expanding and coming together to produce new models of heredity, new tools for studying, and new techniques for predicting the outcomes of human reproductivity

• AND these new techniques were rapidly identifying new hereditary ‘genetic’ diseases…

Knowledge, but not power…

“They’d had a baby with some awful business and all you could say was the had a twenty-five percent risk in its recurring. Couldn’t do much of anything for them. I’d come home after the clinic and my wife would take a look at me and say, ‘You’ve had heredity clinic today.’”

Arthur Steinberg, Lakeside Heredity Clinic, c. 1957

Preconditions for effective and popular screening programmes?

• Sufficient number of known genetic abnormalities

• Accurate results: more than just statistical guesses

• Inexpensive and EARLY screening technologies (amniocentesis, late 1960s)

• Molecular genetics?• Abortion/birth control? (UK: right to

abortion 1967, USA 1973)

Predictions from the ‘new eugenics’

“The new eugenics would permit in principle the conversion of all of the unfit to the highest genetic level…”

Robert L. Sinsheimer, 1969

“Individuals in a society which is willing to allow even normal fetuses to be aborted simply at the request of the parents are not likely to be very tolerant of a known abnormal fetus.”

Orlando L Miller, 1972

“The long-term aim is prevention” : paradoxes and conflicts in genetic

disease

• Medical

• Political

• Cultural

Risk, blame and (social) responsibility: the new Eugenics?

Race, culture and the politics of screening

“I realise that we are treading on delicate from the point of view of racial discrimination, and I’m sure you are aware of the objections that have been raised in the United States to programmes which have set out to screen populations for these disorders. However, it seems to me that we have a genuine acute clinical problem here, which could be dealt with tactfully and efficiently by the Department.”

Prof D. Weatherall to DHSS, 1973

UK Thalassaemia Society, to Ministry of Health, 17/03/81

‘New Eugenics’ and the Law?

• Universal newborn screening for PKU in UK (why PKU?) by 1969-70 (building on local programmes initiated since 1950s

• 1971-3 Sickle cell screening laws enacted in USA

• 1976 National Genetic Diseases Act, USA• Legal suits for failure to inform patients of their

procreative/dysgenic risks by 1978• ‘wrongful life’ lawsuits by 1980

Reading Self-Assessment:Did you notice these key terms

about eugenics?

• Reform eugenics

• Eugenic/dysgenic

• Negative/positive eugenics

• ‘germinal choice’

• ‘genetic engineering’ (1965)

• Human genetic load