The University of Bristol recently unveiled a public statue of Henrietta Lacks – a Black woman whose cancer cells changed the course of modern medicine but were taken without her consent. Here our Equality, Diversity and Inclusion Manager Lou Silver blogs about Henrietta’s legacy and how informed consent must be at the heart of medical ethics and regulation.
'During Black History Month there will be lots of stories about pride, joy and celebration. But Black History Month is also about justice and equality and examining how we can learn from the past to create a fairer future. The story of Henrietta Lacks highlights one of the disturbing abuses of Black people in health research and looks at what this means for health research today.
Henrietta Lacks 1920-1951
Henrietta Lacks had five children. She loved to dance, and she loved to cook, and her favourite was spaghetti! Henrietta was glamorous and stylish, always well dressed with red nails. She was the heart and soul of her family. Sadly, she is not remembered for this.
Henrietta was an African American woman who died of aggressive cervical cancer. The doctor treating her at John Hopkins Hospital, Baltimore (one of the few hospitals to treat Black people at the time) had passed on Henrietta’s diagnostic samples to researchers without her knowledge or consent.
Henrietta’s cells, it turned out, were extraordinary. They had an amazing ability to survive and reproduce and were, in effect, immortal. Because of this, they have been grown in cell lines and distributed internationally and are a mainstay of medical research. They have been used in major discoveries in cancer, immunology and infectious diseases. They were even used in the development of the COVID-19 vaccinations.
Henrietta’s name, medical records and even the genome of the cell (albeit briefly - it was taken down due to public outcry) have been published, all without Henrietta or her family’s consent.
Henrietta’s story highlights why informed consent must be at the heart of medical regulations and ethics. In the last decade scientists have been working closely with the Lacks family to understand Henrietta and their wishes.
Seeking informed consent properly respects a person’s right to determine what happens to them by giving them the information they need to make a decision rather than making it for them. It wasn’t until after Henrietta’s death that ‘informed consent’ began to be taken seriously by both the medical profession and the law, slowly eroding deeply ingrained professional paternalism.
Since 1964, The Declaration of Helsinki, an internationally recognised statement of ethical principles for medical research, has included informed consent as one of its unchanging central principles. Today, thankfully, informed consent is now at the heart of medical ethics and regulation. The HRA works closely with the Human Tissue Authority and provides guidance for researchers carrying out health and social care research in the UK to ensure the rights and dignity of participants of research projects.
Our volunteer Research Ethics Committees ensure that people who participate in research have detailed and understandable information so that they can make an informed decision about whether or not to take part in research. We ensure that risks of research do not outweigh the potential benefits of the project, and that there is no coercion.
Continuing to learn lessons
Whilst our RECs protect the rights and dignity of all users of the NHS, it is fair to say that the majority of the volunteers are White. We aim to be an inclusive organisation, but know we need to do more when it comes to the diversity of our volunteers. We are working hard to increase ethnic diversity on our committees so that the lived experience of people can enrich the reviews that are undertaken.
Crucially, we must recognise that racial inequality in health research isn’t just ‘a thing of the past’. COVID-19 has brought this into sharp focus, not only with the adverse outcomes associated with being from a BAME community, but also in health protection measures such as the availability of oxygen monitors for use at home which were not accurate on darker skin.
Even though we have a good system in the UK, race-related issues still exist in healthcare that could be reduced with more inclusive research. Diversity across funders, sponsors and researchers is essential if we are to move forwards.’