Ethical Piece: Eugenics and Where to Draw The Line
Eugenics is a set of beliefs and practices to improve the human species by selectively breeding people with desirable hereditary traits, such as beauty or intelligence. The concept of eugenics was developed by Charles Darwin’s cousin, Francis Galton, but has been used historically as justification for some of the cruellest acts against humanity, including involuntary sterilisation and the “racial hygiene” programme that culminated in the holocaust.
Eugenics was practised in ancient Rome and ancient Greece but become more prominent in history during the late 19th Century in America. In 1896, it was made illegal for people with epilepsy or those who were “feeble-minded” to marry. In 1911, the Race Betterment Foundation was launched and established a “pedigree registry” and held conferences on eugenics. As this concept took hold, a Eugenics Record Office was formed to track families and their genetic traits and made claims that those most unfit were immigrants, minorities and the poor. In the early 20th century, California started to force sterilisations in mental institutions to protect society from offspring with mental illness.
However, the most famous supporter of Eugenics was Adolf Hitler, who referred to America’s eugenics in his book: Mein Kampf. In the book, Hitler declared non-Aryan races inferior, and supported drastic measures, including genocide, to ensure the German gene pool remained pure. By 1940, those with mental or physical disabilities were euthanised, resulting in hundreds of thousands of people killed.
Naturally, after the horrific way in which people were treated, eugenics lost momentum after World War II, but genetic engineering is a modern way in which we can change or remove genes to prevent or cure disease. Genetic testing allows parents to identify diseases that may affect their child in utero and may cause them to choose to terminate the pregnancy. Recently campaigners have brought this to the media’s attention as the law for terminating a foetus with Down’s Syndrome is currently allowed at any time up until birth. By having the law change from allowing termination up to 24-weeks for healthy pregnancies, but termination being permitted until birth for Down Syndrome foetuses, is this any different than selective breeding to prevent genetic abnormalities?
Eugenics was at the forefront of people’s minds last month following a lot of media coverage, but why was this the case?
In the UK, a government advisor resigned in February after making controversial claims that intelligence is linked to race. The advisor, named Andrew Sabisky, who has been linked to many controversial opinions, argued that long-term contraception could tackle the problem of the “permanent underclass”, that black people had innately lower average IQs than white people, and that politicians should consider racial differences in intelligence when designing immigration laws.
Richard Dawkins, an evolutionary scientist, flamed the recent controversy by stating that scientifically, eugenics would work for humans. His tweet, which received backlash, was taken as support for the practice of eugenics but it is simply stating that scientific breeding of humans would work. Moreover, due to the taboo, a lot of research which is aimed at improving people’s health can sometimes be blasted as eugenics and innovation in that space is shut down before properly explored.
Late last year, George Church revealed plans to release a dating app based on genetics in an interview with 60 minutes, which would reduce the likelihood of people matching and having a child with a rare, heritable disease. The inspiration behind the app was a Jewish community in Brooklyn, who tend to marry within their small community via arranged marriages. This community are at higher than average risk to developing diseases such as Tay-Sachs, a fatal neurodegenerative disorder, and the app would show the community who are potential matches, not those who are not.
Naturally, the media exaggerated this to look like a modern form of eugenics, and in a Q&A released following the backlash, Church states that the app would be used to help make genetic choices easier, but that matchmaking may be an option for people who are concerned with this rather than less affordable methods like gene therapy or IVF-PGD.
Much of the debate on eugenics has been on whether it could be done in humans morally, rather than whether it should be. With the aims of eugenics being to “improve” the gene pool of a species, it would require somebody to define which traits are desirable, and this is likely to be reflective of how they perceive themselves.
Is Genetic Engineering and Genetic Testing Modern Eugenics?
Despite the historical catastrophes surrounding eugenics, as our understanding of genetics advances, the moral and ethical issues behind selective genetic engineering or testing will continue to be the cause of controversy.
The current use of genetic tests for medical purposes tend to fall into one of three categories: a) carrier screening, b) foetal screening or c) disease-risk. Are these modern forms of eugenics?
Carrier testing is generally only used when one party is concerned about passing on a genetic variation that they know they carry on to their children. This is morally acceptable, as they have reason to believe they are a carrier and they already have a partner to test. However, with the falling cost of genetic tests, and it the ease of determining who carries certain alleles, is deciding to have children with this partner based on their genetics so different from carrier screening?
Until recently, non-invasive pre-natal testing was only advised to at-risk mothers, i.e. women who are over 35 or who previously had a pregnancy with a trisomy. As these tests become safer, it could be offered to all pregnancies. Is avoiding pregnancies with trisomy eugenics, despite knowing that this could cause debilitating disease?
And finally, genetic testing to determine disease risk is becoming more common. Although disease-risk is less likely to be a factor in determining a partner for late-onset treatable diseases such as cancer, the wealth of knowledge the whole genome can produce could mean that you go to more screenings and take better care of your, or your child’s health.
It all comes down to what decision is being made based upon a person’s genetics.
Is a dating app used to prevent genetic disease comparable to genetically testing embryos for disease pre-implantation? Is one more ethical than the other?
Or indeed, is the prevention of genetic disease by choosing not to implant embryos based on their genetics worse than aborting a foetus that is affected by one? Are these not both “eugenics”?
If the science is going to benefit the individual it affects, i.e. prevents an illness that will lower the quality of life for the individual patient, this is where the debate starts. However, using eugenics to discriminate against people will continue to be a morally wrong and a taboo subject.