Posted by ccld201
11 October 2024This blog explores the role of genetic testing in adults as a form of preventative medicine and examines whether it borders on modern-day eugenics. Eugenics is a theory and practice for improving the human species using selective mating to eliminate unwanted genes and maintain desirable traits. Genetic testing focusses on improving health and is a positive addition to our healthcare; however, if the opportunity is not provided to the population equally, then there are unequal effects that would take place long term. This blog discusses whether these long-term effects could have negative implications on human rights and warns about the possible evolution of genetic testing towards a modern-day eugenics movement.
Wide ranging eugenics practices
The Charter of Fundamental Rights of the European Union states under Article 3, 2b that there is a “prohibition of eugenic practices, in particular those that aim at the selection of persons”, but what comes under eugenic practices? There are both positive and negative types of eugenics, with positive eugenics covering the encouragement of parents with desirable characteristics to produce more children; and negative eugenics attempting to minimize transmission of traits that have been unfairly deemed disagreeable and incorrectly assumed to reduce the value of those involved in this selection process.[1]
Eugenic practices consist of, but are not limited to:
Without personal experience, it can be hard to imagine how the above practices can still be happening today or how they relate to modern healthcare systems like the NHS. The debate around whether genetic testing is negative eugenics is complex, as it aims to provide healthcare, rather than prevent the transmission of certain traits. However, if genetic testing is not accessible to all races and populations equally, it risks becoming a eugenics practice.
The effect of socioeconomic factors on healthcare
Genetic screening can be defined as any kind of test performed for the systematic early detection or exclusion of a hereditary disease, the predisposition to such a disease, or to determine whether a person carries a predisposition that may produce a hereditary disease in offspring.[3] It provides the ability to diagnose patients before symptoms occur, leading to treatments or giving an opportunity to plan care and improve quality of life.[4]
Angelina Jolie had a double mastectomy in response to testing positive for BRCA 1 gene in 2013. A study revealed this linked to a 2.5-fold increase in referrals to genetic services in the United Kingdom.[5] According to the NHS website patients can receive genetic screenings if referred by their doctor and/or hospital specialist for health condition diagnosis, if a relative has a disease thought to be caused by changes in genes, if close relatives have an inheritable form of cancer, and if parents
have inheritable diseases that could be passed down to their children. It specifies however that patients will generally only be referred if they have a suspected genetic condition or a particular type of cancer. These criteria indicate that without a history of disease, people are unlikely to be referred to a specialist within the NHS, leaving private health care as the only option for genetic screening.
High-profile figures like Angelina Jolie may increase the desire for genetic screening, but only those who can afford it have access to private healthcare. The Independent Healthcare Providers Network reports 63% of people would consider using private healthcare, yet many are without access. If healthcare, including genetic testing, is only available to those in a higher economic group, is it a form of modern eugenics?
Genetic testing could be seen as euthenics, allowing patients to make informed decisions about their health, lifestyle and environment, based on their genetic information. Many genetic disorders affect fertility and while no healthcare professionals prevent individuals with genetic conditions from having children, fertility challenges can make the process is long and arduous and socioeconomic factors play a role in this. Poverty plays a massive role in access to NHS resources, with limitations including travel costs, internet access for online services and phone call appointments. Patients must also qualify for NHS referrals or else must pay for private healthcare. Y-chromosome microdeletions affect fertility impacting sperm count or efficiency, and testing typically occurs after 1 year of unsuccessful conception. Treatment often then involves IVF which also has specific referral criteria. With only three NHS-funded rounds typically offered, many turn to private options. Each year, 50,000 people in the UK undergo fertility treatment, with most opting for private care.
How does this become eugenics?
In the UK, people from some minority ethnic backgrounds are disproportionately affected by poverty, thus widening the gap in access to essential health services including genetic testing and fertility treatment given because of that. Wealthier populations are also those with certain racial characteristics and they include Indian, Chinese and white people. This combination of racial and economic factors means that access to genetics-based treatments is not just about income, it is also about race. Typically, Bangladeshi and Pakistani have lower incomes.
As discussed, genetic testing can influence reproductive health. Neglect of reproductive health (when it is aimed at specific groups) is a eugenics practice – listed above- and access to a possible diagnosis and then treatment for a disease that could affect reproductive health is a service that should be equally provided. This inequality risks widening the gap between groups, not only leading to certain genetic traits being associated with social status but also because it could lead to removal of certain traits in the long term. Addressing this is crucial, not only to prevent eugenics but as a basic human right under Article 21 of the Universal Declaration of Human Rights stating that everyone has the right to equal access to public service in their country. I think offering genetic testing more openly is imperative because of this.
This can come with its own issues however, including what the NHS can afford. For instance, to perform a diagnostic test for a known mutation from familial mutations the cost is £185- £240 and for chromosomal abnormalities the cost is £205 according to the oxford genetics laboratories. Maybe a short-term solution is to add NHS-provided genetic testing for the possibility of disorders that effect the reproductive system. Although this doesn’t solve the overall imbalance and racial disparities caused by socioeconomic factors, it does prevent some reproductive eugenic practices. Long-term it will be important to investigate the reasons that certain groups are typically associated with lower incomes and address this issue.
Daisy Downs is a final year Neuroscience student at the University of Exeter.
[1] Rachel Iredale, ‘Eugenics and Its Relevance to Contemporary Health Care’ (2000) 7 Nursing Ethics 205.
[2] David McConnell and Shanon Phelan, ‘The Devolution of Eugenic Practices: Sexual and Reproductive Health and Oppression of People with Intellectual Disability’ (2022) 298 Social Science & Medicine 114877.
[3] Béatrice Godard and others, ‘Population Genetic Screening Programmes: Principles, Techniques, Practices, and Policies’ (2003) 11 European Journal of Human Genetics 49.
[4] Sierra Sandler, Lauren Alfino, and Mir Saleem, ‘The Importance of Preventative Medicine in Conjunction with Modern Day Genetic Studies’ (2018) 5 Genes & Diseases 107.
[5] D. Gareth Evans and others, ‘The Angelina Jolie Effect: How High Celebrity Profile Can Have a Major Impact on Provision of Cancer Related Services’ (2014) 16 Breast Cancer Research 442.