5.2 Biomedical ethics & Henrietta Lacks
Ethics: The incredible legacy of Henrietta Lacks
2021 marked the centenary of the birth of Henrietta Lacks whose HeLa cells have arguably helped save millions of lives. But she died in 1951 unaware of any of this. Her case is just one story where correct ethical procedures were ignored in the name of research and progress. Here we explore some examples that impacted Black American communities in particular in the not too distant past and how this contributes to our understanding of biomedical ethical standards.
Biomedical ethics is a branch of ethics that deals with the principles, values, and decision-making processes involved in the medical profession. It encompasses a range of topics, including professional conduct, patient autonomy, informed consent, confidentiality, research ethics, and the use of new technologies. Biomedical ethics seeks to determine the moral implications of medical decisions, exploring questions of justice, fairness, and equity in healthcare. It is an important part of healthcare that ensures ethical behavior, promotes patient autonomy, and upholds human rights.
Overview
Biomedical material has the potential to revolutionize the healthcare industry, but with the great potential comes ethical considerations. In recent years, there has been a huge increase in the availability of biomedical material, much of which is used to create new treatments and drugs. However, the ethical implications of using this material need to be carefully considered, as it can sometimes be obtained unfairly or without consent.
The ethical considerations for biomedical material can be broadly broken down into two categories: the rights of donors and the transparency of the process. When it comes to donors, the primary concern is that they are given the right to make an informed and voluntary decision as to whether they want to donate their material. Donors should be informed of all potential risks, outcomes, and benefits of donating and should also be given the right to withdraw their material if they so wish.Transparency is also an important ethical consideration. The legal framework guiding the process of biomedical material acquisition should be clear and open, so that those making decisions are fully aware of the potential consequences. Furthermore, there should be full disclosure of any potential benefits or risks associated with using this material.
Overall, biomedical material has great potential to benefit humanity, but it is important that all ethical considerations are taken into account. Donors must be provided with the means to make an informed and voluntary decision, and the process of acquiring biomedical material must be transparent and open.
Why are bioethics needed?
In this awesomely detailed video from Crash Course Black American History[1], Clint Smith explores the Tuskegee Syphilis Experiment and its place in a history of racism and inequality. Saying that, it is important to note that this experiment only ended in 1972, just 50 years ago so we use the notion of historical context lightly. One of the key ideas this raises, along with the case of Henrietta Lacks, is 'informed consent' and the conscious, agreed participation of the subject in any scientific studies. The National Research Act was drawn up in 1974 which set out to protect the subjects of scientific experiments. Furthermore, the Tuskegee Syphilis Experiment was just one of the cases which influenced the philosophers Thomas L Beauchamp (1939—present) and James F Childress (1940—present) to write The Principles of Biomedical Ethics and find a common morality in the biomedical field.
Beauchamp and Childress[2]
There are four principles at the heart of Principles of Biomedical Ethics by philosophers Thomas L Beauchamp (1939—present) and James F Childress (1940—present). These principles do not sit alone and often clearly connected with each other.
These are its four principles:
- Respect for autonomy
- Beneficence
- Non-maleficence
- Justice
What is 'respect for autonomy'?
This is often seen as a starting point when it comes to considering biomedical ethics as it embraces the essence of being human - that any actions we take are our own choice. This is particularly significant in a healthcare setting as people can be especially vulnerable when making difficult decisions. It is a tricky area to navigate as a medical expert as you will know more than the patient in front of you in all likelihood but the respect for autonomy captures the need to treat everyone in a biomedical context as capable. This is not just about getting permission; this is about the individual feeling free to make their own informed decision and not pressured in a particular direction.
What is beneficence?
Beneficence goes hand in hand with nonmaleficence and the principle of doing as much good as we can. This is not just about not treating someone badly, but about actually treating them well. Ethically this is interesting as it works on an individual level and how a medical professional treats others but also it can refer to systems such as government approaches to healthcare initiatives. There can be a clash here with the first principle as a medical professional may well be working in the best interests of their patient but this patient is refusing treatment. It is a tricky field to navigate and a clear clash of principles can occur. It is interesting to consider what the implications are for bioethics without beneficence?
What is nonmaleficence?
Nonmaleficence is the principle of refraining from causing intentional harm toward another human being. The idea of 'do no harm' might seem counterintuitive when it comes to a biomedical field as this is an area which does involve doing things that might be deemed harmful; for example experimenting with new drugs with side effects and operating on patients. Beauchamp and Childress emphasise that the words 'unnecessarily' and 'unjustifiably' were important here. Ethically we are dealing with the notion of proportionality and that if harm is going to be caused by a particular action, is it proportionate to the amount of good it could achieve or if there are less harmful alternatives.
What do we mean by Justice?
How do we ensure that the right priorities are determined in the medical field? On the basis that you cannot treat everyone at the same time, how do you decide who gets treated first or with which medications. This is a good battleground for philosophical debate and worth considering with Ethical dimensions, issues and dilemmas and Ethical Thinking pages as different ethical approaches will create different outcomes. For example if you went with a consequentialist approach such as utilitarianism, this dictates that you are looking for a way that generates the best outcomes or most happiness. Or you might allocate medical resources depending on need and who needs treatment the most which is how triage works in emergency situations.
What do you think?
Beauchamp and Childress' four principles can be criticised for being too broad and vague; people need more direction and frameworks when it comes to making such difficult decisions. What do you think? In the context of the Tuskegee Syphilis Experiment, could it have helped prevent such a dreadful situation?
How has your life been impacted by HeLa cells?
'In 1951, Henrietta Lacks, a black woman from Baltimore, USA, died of cancer. However, cells taken from her body without her knowledge continued to grow and multiply even after her death. They became the first 'immortalised human cell line' and changed medical science forever. HeLa cells have helped to create cancer treatments, vaccines and have even furthered our understanding of space travel. Now, 100 years on from Henrietta's birth, her immortal cells are helping researchers develop a Covid-19 vaccine'[3]
Henrietta Lacks and her story has only been told relatively recently - chiefly in the journalist Rebecca Skloot's 2010 non-fiction book which took her ten years to research and write. And it is the telling of the story that is so interesting here as prior to this the fact that Henrietta Lacks' story was unknown has profound ethical implications, least of all for her direct family. Firstly, let's find out more about her and why she is so important.
BBC REEL Henrietta Lacks: The 'immortal' cells that changed the world
ANALYSIS: Watch this video and make a timeline of how Henrietta Lacks' cells were used up until the discovery of this information. Then discuss why each part of your timeline is significant.
EVALUATION: The ethical implications
One of the key parts of being able to evaluate over analyse is the ability to take a step back and consider 'so what?' at whatever case study you have at hand - this is thinking about the big picture. With the case of Henrietta Lacks and the Tuskegee Syphilis Experiment there are many discussion avenues to go down when it comes to ethics. When it comes to a piece like the reflective project, you will have to make the decision of which ethical aspects to consider rather than take on everything. Let's put this into practice here with looking at the wider ethical implications of data collection and what the two examples we have looked at contribute to this debate.
Henrietta Lacks, the Tuskegee Experiment, and Ethical Data Collection[4]
Making connections with other contexts and case-studies
The video here brings in a fictitious example of an ethical dilemma based upon a storyline in the TV series Parks and Recreation. A good example of creative thinking and considering 'what if?' when applying an ethical issue to a different context. Based upon your research and insight gained into both the case of Henrietta Lacks and the Tuskegee Syphilis Experiment, can you find any other connections with other contexts and case studies and the ethical issues they raise? Read the article from Nature magazine below and ask yourself 'What should the legacy of Henrietta Lacks be now and who decides'?[5]
Reflection through connection
In your journal and/or in discussion with a partner, take time to look back on what you have explored in this introduction to Bioethics. Choose three aspects that you would like to explore in more detail and see how they connect to your career-related studies and DP subjects in any ways. If you are working with someone from the same subject areas as you, take time to mindmap before discussion and then compare notes.