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Screening sperm donors for autism? As an autistic person, I know that’s the road to eugenics Screening sperm donors for autism? As an autistic person, I know that’s the road to eugenics
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Britain’s largest sperm bank has a policy of turning away autistic donors and those diagnosed with other neurological disabilities, such as attention deficit hyperactivity disorder [ADHD], dyslexia and obsessive compulsive disorder.Britain’s largest sperm bank has a policy of turning away autistic donors and those diagnosed with other neurological disabilities, such as attention deficit hyperactivity disorder [ADHD], dyslexia and obsessive compulsive disorder.
The London Sperm Bank’s policies are deeply concerning. But to those of us who have been monitoring the ways in which genetic knowledge is being misused across the globe, they are not surprising. In egg donations (as in sperm donations) similar genetic screening of a diagnosis and a family history of autism, dyslexia and obsessive compulsive disorder is not uncommon. There is considerable evidence to support that these are all conditions with strong genetic components.The London Sperm Bank’s policies are deeply concerning. But to those of us who have been monitoring the ways in which genetic knowledge is being misused across the globe, they are not surprising. In egg donations (as in sperm donations) similar genetic screening of a diagnosis and a family history of autism, dyslexia and obsessive compulsive disorder is not uncommon. There is considerable evidence to support that these are all conditions with strong genetic components.
In the US, where sperm banks are only very lightly regulated, recipients may select for everything from preferred pets and hobbies to astrological sign. In Israel, sperm banks have been fielding a large number of requests for sperm from members of the military, particularly combat soldiers. As early as the 1980s, unsuccessful efforts were made in California to populate a sperm bank entirely with deposits from Nobel prizewinners.In the US, where sperm banks are only very lightly regulated, recipients may select for everything from preferred pets and hobbies to astrological sign. In Israel, sperm banks have been fielding a large number of requests for sperm from members of the military, particularly combat soldiers. As early as the 1980s, unsuccessful efforts were made in California to populate a sperm bank entirely with deposits from Nobel prizewinners.
Two years ago, the Western Australia Reproductive Technology Council authorised an IVF clinic to use pre-implantation genetic diagnosis (PGD), a technique that screens embryos for traits such as gender prior to implantation. Since autism is more commonly diagnosed in boys than girls, the council authorised the screening out of male embryos in families with a prior history of the diagnosis.Two years ago, the Western Australia Reproductive Technology Council authorised an IVF clinic to use pre-implantation genetic diagnosis (PGD), a technique that screens embryos for traits such as gender prior to implantation. Since autism is more commonly diagnosed in boys than girls, the council authorised the screening out of male embryos in families with a prior history of the diagnosis.
The Australian state of Victoria has followed suit. Fortunately, the UK’s fertility regulator has not. The Human Fertilisation and Embryology Authority (HFEA), refuses to sanction such techniques, noting the diversity within the autism spectrum and the extent to which sex selection represented an overly speculative way of screening.The Australian state of Victoria has followed suit. Fortunately, the UK’s fertility regulator has not. The Human Fertilisation and Embryology Authority (HFEA), refuses to sanction such techniques, noting the diversity within the autism spectrum and the extent to which sex selection represented an overly speculative way of screening.
The effectiveness of IVF sex selection to avoid autism is up for debate. As an adviser to the American Psychiatric Association DSM-5 workgroup crafting the new diagnostic criteria for autism, I joined my colleagues in the autistic community in making the case that the gender disparity in autism diagnosis was more a matter of sociology than biology. While autism is diagnosed in boys four times as often as in girls, many researchers and advocates believe that this is at least in part attributable to systemic underdiagnosis of women and girls.The effectiveness of IVF sex selection to avoid autism is up for debate. As an adviser to the American Psychiatric Association DSM-5 workgroup crafting the new diagnostic criteria for autism, I joined my colleagues in the autistic community in making the case that the gender disparity in autism diagnosis was more a matter of sociology than biology. While autism is diagnosed in boys four times as often as in girls, many researchers and advocates believe that this is at least in part attributable to systemic underdiagnosis of women and girls.
In women and girls, traits may be missed owing to different social expectations and subtle biases on the part of medical professionals similar to those that drive diagnostic disparities on the basis of race, age or income. The average clinician still thinks of autism in terms of an eight-year-old Caucasian boy from a middle-class family, and is more likely to miss any autistic person that doesn’t fit that profile.In women and girls, traits may be missed owing to different social expectations and subtle biases on the part of medical professionals similar to those that drive diagnostic disparities on the basis of race, age or income. The average clinician still thinks of autism in terms of an eight-year-old Caucasian boy from a middle-class family, and is more likely to miss any autistic person that doesn’t fit that profile.
Nonetheless, the intent of IVF sex selection is clear: reproductive technologies are being used to remove autistic people from future generations, not just to create “designer babies”. Privately run sperm and egg donation programmes, IVF clinics and laboratories around the world are making decisions that could eventually change the human race.Nonetheless, the intent of IVF sex selection is clear: reproductive technologies are being used to remove autistic people from future generations, not just to create “designer babies”. Privately run sperm and egg donation programmes, IVF clinics and laboratories around the world are making decisions that could eventually change the human race.
Last month, I joined more than 180 progressive academics, scientists, activists and public intellectuals in an open letter expressing concern over how new gene editing techniques allow for heritable human genetic modification: changes to the human genome that could irrevocably alter the future generations of humanity. New technology is emerging that will allow for “designer generations”.Last month, I joined more than 180 progressive academics, scientists, activists and public intellectuals in an open letter expressing concern over how new gene editing techniques allow for heritable human genetic modification: changes to the human genome that could irrevocably alter the future generations of humanity. New technology is emerging that will allow for “designer generations”.
Many autistic people, myself included, celebrate our unique ways of cognition, sensation and social interaction. We have certain cognitive strengths alongside, and often inseparable from, the very real challenges we face in social communication and sensory processing.Many autistic people, myself included, celebrate our unique ways of cognition, sensation and social interaction. We have certain cognitive strengths alongside, and often inseparable from, the very real challenges we face in social communication and sensory processing.
But although some evidence suggests eliminating autism, dyslexia and other similar disabilities might remove valuable talents, along with impairments, this is not the primary reason to oppose the emerging eugenics . There is no clear demarcation point between selection on the basis of autism, obsessive compulsive disorder or dyslexia and selection on the basis of social gregariousness, athleticism or personality.But although some evidence suggests eliminating autism, dyslexia and other similar disabilities might remove valuable talents, along with impairments, this is not the primary reason to oppose the emerging eugenics . There is no clear demarcation point between selection on the basis of autism, obsessive compulsive disorder or dyslexia and selection on the basis of social gregariousness, athleticism or personality.
Neurological disabilities may include severely disabling attributes in many people, but are often extreme manifestations of traits existing in the general population. If we believe that having a child implies making a commitment that persists independent of the existence of preferred attributes, designer children should be a source of grave concern.Neurological disabilities may include severely disabling attributes in many people, but are often extreme manifestations of traits existing in the general population. If we believe that having a child implies making a commitment that persists independent of the existence of preferred attributes, designer children should be a source of grave concern.
Furthermore, disability has always been contextual. Many individuals who are today diagnosed with learning difficulties or intellectual disabilities would not have been considered such in a society before universal literacy, for example. Tomorrow’s social and technological progress may lead to still new disabilities. demonstrating that the quest to eliminate disability will always be a moving target. Such changes may leave humanity less equal, less diverse, and perhaps even less human.Furthermore, disability has always been contextual. Many individuals who are today diagnosed with learning difficulties or intellectual disabilities would not have been considered such in a society before universal literacy, for example. Tomorrow’s social and technological progress may lead to still new disabilities. demonstrating that the quest to eliminate disability will always be a moving target. Such changes may leave humanity less equal, less diverse, and perhaps even less human.
When eugenics threatens to take control of new reproductive technologies, it requires a response on the level of public policy rather than of the individual. The decision by the HFEA to probe the London Sperm Bank’s screening practices is a welcome one. It has already acted to block the use of PGD sex selection as a speculative means of preventing autism. It should apply the same logic to restrictions on sperm and egg donation.When eugenics threatens to take control of new reproductive technologies, it requires a response on the level of public policy rather than of the individual. The decision by the HFEA to probe the London Sperm Bank’s screening practices is a welcome one. It has already acted to block the use of PGD sex selection as a speculative means of preventing autism. It should apply the same logic to restrictions on sperm and egg donation.
Nor should we stop there. Regulators worldwide should curb eugenic practices. New instruments in international law may be necessary to ensure that “designer babies” do not gain a national home, sparking medical tourism. Managing these challenges presents thorny ethical questions, particularly within a society with a weak commitment to women’s reproductive choice. But it is incumbent upon government to try to develop answers, lest the unfettered free market be allowed to design the future of the human race.Nor should we stop there. Regulators worldwide should curb eugenic practices. New instruments in international law may be necessary to ensure that “designer babies” do not gain a national home, sparking medical tourism. Managing these challenges presents thorny ethical questions, particularly within a society with a weak commitment to women’s reproductive choice. But it is incumbent upon government to try to develop answers, lest the unfettered free market be allowed to design the future of the human race.