Drug trialling on vulnerable communities has a eugenic past that lives on today.
Writer: Lucas Heeringa
Editor: Lucy Masdin
Artist: Lia Bote
The oral contraceptive tablet, colloquially known as ‘the pill’, has allowed countless people to take more autonomy over their lives and has rightly been heralded as one of the most impactful products of the 20th century. However, despite it being the most popular form of prescribed contraceptive in the UK, with just under 1 in 3 women using it, very few know the unsettling journey it took to get here. With COVID-19 vaccine trials covering the headlines this past year, it is important to understand the ethics of drug trials and how the populations chosen for them have historically been rooted in eugenics.
As it will soon become clear, it is fitting for the story of the pill to be intertwined with that of the oldest colony in the world; Puerto Rico. The Caribbean island’s population of 3 million are all US citizens and have been since 1917. However, it is not an equal citizenship. Those on the island lack full voting power and have fewer regulatory laws protecting them. The latter is what made it so attractive to the American gynaecologist John Rock and biologist Gregory Pincus in the 1950s.
Margaret Sanger, the founder of Planned Parenthood, had asked Rock and Pincus to develop an oral contraceptive medication. To get FDA approval they would need to undertake large scale trials. However, this would not be possible on the mainland due to its restrictive laws on contraceptive research. So, they turned their eyes to Puerto Rico and a man called Clarence Gamble, heir to Procter & Gamble and friend of Sanger.
Following the US invasion of Puerto Rico in 1898, local farmers had their land taken away which meant that the island was struggling with poverty whilst also undergoing a population increase. After Franklin D. Roosevelt stopped funding birth control clinics in Puerto Rico as a result of pressure from the Catholic church, Gamble stepped in. With help from US Law 116, he started systemically sterilising Puerto Rican women in his clinics against their knowledge. He also set up clinics providing free sterilisations in factories, which then awarded jobs in favour of women who had undergone the procedure. This culminated in a third of Puerto Rican women being sterilised. What happened in these clinics was systemic eugenics and white supremacy, as Gamble and his colleagues said they were making room on the island for white people.
Rock and Pincus teamed up with Gamble as he already had the infrastructure to promote the pill. Women were told that the pill would stop them from getting pregnant but were not told they would be taking part in the first trial or that the side effects were not well understood. The pill given to these women was three times as strong as the one used today. Three women were recorded to have died but as no autopsies were undertaken it cannot be said if it was due to the early pill formulation.
These women had some benefit from the pill, but as it was taken without an understanding of it being a trial, it was unethical. In 2004, living participants reported bitterness at having been kept in the dark. Furthermore, the lasting cultural effect of Gamble’s clinics can still be seen in Puerto Rico, where 39% of women in a marriage or union today have undergone sterilisation. Rates are still very high because the market price of the pill has not been accessible to many women on the island since it became commercially available. This is the case with any form of contraception or abortion care. To provide Puerto Rican women with the same reproductive rights as their continental counterparts there needs to be more effective subsidisation, education and trained healthcare professionals. Clinics should also be made more physically accessible to women living throughout the island. Mayra I. Díaz Torres is the director of one such clinic and is also fighting for trans-inclusive reproductive rights through the Aborto Libre campaign.
To clarify, what happened in Puerto Rico in the 1950s was not a one-off event. Just last year, news broke that unnecessary hysterectomies were carried out on women in an ICE detention centre. Also in 2020, two French doctors said they wanted COVID-19 vaccine trials to take place in Africa. They cited a higher participation rate as their explanation. This is despite the fact that in a low resource environment it is harder to obtain informed consent. Plus, these populations have higher participation rates because people know it might be their only chance at getting the vaccine. Is that really a choice?
There are two things that need to happen. More legislation needs to be put into place to protect vulnerable communities from historically eugenic practices, such as non-consensual sterilisation and drug testing. This includes detained people, migrants, people in existing and former colonies, disabled people, and those who do not speak the dominant language ‒ essentially, anywhere where there is a power dynamic. Also, we need to work towards global equal access to pharmaceuticals, so people are not pressured into participating in trials out of desperation. Then, people worldwide will be empowered to make a real decision as to whether they want to participate in a trial or not.