Early this week (correction: last week. I started writing this last week but forgot to update the wording) I attended the Faculty of Health Sciences’ Bioethics Day. I found the talks very interesting and, at times, confusing. I won’t deny that there were some points that I just did not understand but I at least take comfort in that many other people, I think all my academic seniors, seemed just as confused. There were four talks in three sections, namely research ethics, professionalism and circumcision. I want to share, very briefly, what was said.
I was going to share everything in a single post but it’s actually quite a bit of effort writing everything up and I’ve been tired recently so I’ve broken it down a bit. I’ll post two talks now and the next two later.
I – Research Ethics
“Stored human biological material: where’s the harm?”
Dr Lesley Henley
This talk essentially focussed on what biological materials mean to people, particularly with regard to their cultural beliefs, in particular it focussed on blood.
To most people reading this, you don’t worry too much about donating blood for research purposes. You have far more than gets taken and your body is constantly producing fresh blood. In some cultures, however, blood can be seen as unreplenishable and they worry that by giving blood they may one day run out or that it will upset the balance in their bodies. If you take blood for a test or research but then don’t produce any results that can actually be seen as robbery. That’s not the only superstition about blood. In some areas in Africa there are real fears that researchers are taking the blood and then selling it elsewhere. That stems from the belief that black blood is stronger than white blood.
In other cultures people may have a really strong connection to biological material and require that it be returned for proper burial or some ceremony. To those people the return of biological samples is akin to the return of the bodies of soldiers that have died outside of their country. It’s not something that they take lightly. The results of testing may contradict a culture’s beliefs or taint their reputation. For example it has happened that genetic information from samples has shown tribal origin stories to be false. This can have a devastating effect on them. Similarly if you show that a tribe has a genetic predisposition to mental illness it could lead to them being labelled as crazy.
One of the questions left at the end was what should be done about those old cultures? Should ignorance be protected so as not to harm people’s feelings? I’d say no. Reality wins. You have to take culture into account but we must also work towards fostering an evidence-based view of the world. Beliefs that a certain race has better blood or that you only have a certain amount of blood are completely wrong. I think culture is important but is not more important than reality. We shouldn’t sit back when someone’s culture says it’s okay to kill albinos and use their bodies for medicine (as happens in Africa) but challenge it. That applies to less harmful cultural beliefs as well as though they may be benign individually they contribute to a dangerous state of mind where evidence is neglected if it contradicts someone’s established views.
Many of the points referenced the story of Arizona State University and the Havasupai Indians.
“Who owns human biological samples?
Associate Professor Anne Pope
This is the one that I struggled to understand and while I can share the notes I made I’m not sure how correct they will be.
This talk started by reminding us that you cannot own a person and you can’t own a part of a person. Biological samples are a part of a human and so they can’t be owned either. At least not legally. It then continued discussing various terms associated with biological material and how those were often the same as used in property law but also how their use differed with biological samples not being property. For example people donate their bodies to science but donation usually implies the severing of all ties. In the cases of biological material there are often conditions attached, such as what a sample may or may not be used for.
The particularly difficult point, which many in the audience also struggled with, was that you can’t own a person, and that includes yourself. Although you’d think your body belongs to you, legally you have no ownership over it or your own biological material. So it would seem you are not able to sell yourself or any of your parts as you don’t actually own yourself. To me that’s a very strange situation and perhaps someone will read this that can explain it better but I can’t.
Informed consent, we were told, wasn’t so much about the biological material itself as being for violation of bodily integrity. This went in hand with the lack of owning your own body because your tissue wasn’t just about you but affected those related to you. You might be fine giving up your biological material and having the information freely available but your twin might feel differently and has the same genetics as you. In the same way your samples can say something about your family and even your tribe or race and they needed to be taken into account too.
This led us onto reciprocity where people gained something in return for their biological material and what that something should be. Should you pay people for working in research? Build a school to benefit the community? And wouldn’t the research results themselves be a benefit, not just to the participants but to the entire world? Assoc. Prof. Pope said she liked the idea of stewardship of biological materials.
I totally understand that this section has probably been very confusing to read, and I apologise for that, but that’s because the talk was quite confusing to me.