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Biobanking, the sharing of samples for research purposes, is an emerging area in LMICs. The issue of broad, un-specified consent needs to be addressed, as well as consent given by parents on behalf of their children. We also need to ensure that biobanking doesn’t increase the inequity between developed and developing countries, and that community perceptions about biobanking ultimately feed into policies, guidelines and ethical frameworks.

My name is Dr Dorcas Kamuya, I am a social scientist at the KEMRI Wellcome Trust Research Programme. I have been in the Programme for quite a number of years. I have various research interests, all of them around empirical ethics on complex topics.

The one specific topic I will talk about is biobanking, the sharing of samples for research purposes. Biobanking is well developed in developed countries, and is an emerging area in developing countries. There is real importance for research in biobanking, and some of the reasons why has been promoted, for example, because you can have fast turnaround of results, you can compare samples across different timelines, across different contexts, across different generations, understand how it has evolved, understanding the molecular biology of what was happening in the body. There is a lot of scientific value in biobanking.

Because it is an emerging area in developing countries there are a lot of ethical issues, and that is the area that I am currently exploring. I say complex because not many people know about biobanking, it is unfamiliar even for research institutions, for those who work in research institutions, and more so for the lay public.

When it comes to sharing samples there are a lot of values attached to it, there are views and perceptions that need to be considered, this is the areas that I am interested in. There is scientific merit in biobanking and my work is to focus on ethical issues. There are issues for example, when samples are stored, do we have the right permissions for storage, who gives the permission? So this is the biobank itself, the setting up of a biobank. Why I say it is an ethical question is because you are investing money that could have been used for research or for other research purposes, this is where the ethical issue comes in. That question is tied to not only the efficiency of biobanking, but also how many biobanks do you have to set up in any one country, in any one setting.

The issues that I am more focused on are related to consent, which have emerged quite a lot. At the time that samples are collected, we used to have very specific consents, specific to how that sample would be used for the purpose of that consent. Over the last 10-15 years, we have moved to what we call “broad” consent, in which participants in research are giving consent for samples to be used for future purposes, un-specified, and to be stored indefinetely. Sometimes they can put limitations on how long they can be stored.

There have been a lot of questions as to whether broad consent is real consent, whether when you give consent for something that is not specific is that consent? That is becoming a philosophical debate, but for me, more applied – what do people think about that kind of consent?

There is also the whole area of minors – when children’s samples have been collected when they are children, the parents often give consent. The current question is when they reach maturity, should they be re-consulted to check whether the samples can continue being stored or they can continue to be used in biobanking.

Tied to that is the issue of confidentiality. When samples are shared, we say they are pseudo-anonymised: if a sample is shared with no data, it is not very helpful scientifically, so some data has to be attached, which could potentially be hacked and compromised to know which individuals where involved in the study. So how we safeguard and put limits to confidentiality? Do people have the right to withdraw their samples from being shared?

Who else needs to give permission for biobanking to happen? Is the individual’s consent enough? It is often said that research regulatory committees need to come in. However, we know historically that there are inadequacies in ethics committees. They have such a strong focus on the individual, whilst biobanking opens up to what we call open science, where it is about more than just the individual, the individual is important but it’s not the primary focus. The primary focus is how within sharing platforms, data can be used for scientific value. This is a completely different ethical thinking, a different ethical framework from what currently has been in place. It is not just about listening to the people, but also critiquing the ethical framework in place, and finding what we can do for biobanking, which does not suit the current framework.

A huge area that is coming up, especially in biobanking in low and middle income countries, is issues of benefit sharing, issues related to ensuring that developing countries don’t become sample suppliers without themselves having the intellectual and scientific capacity to ask questions that are important for this region and have access to samples from anywhere in the world to answer those questions. That is a huge area of debate: how do we ensure that biobanking doesn’t increase the existing inequity between developed and developing countries? That brings into mind how samples are shared, who is sharing and for what reasons, why are samples being requested, what research questions are they going to address and who will benefit when the answer if found.

Why should people invest in biobanking? I would probably turn that to why should people invest in the ethics of biobanking, for which there are many reasons. In the work that I am doing, I have talked about all the ethical issues we are dealing with. I think every community member who is contributing a sample has a say on how that sample should be used. If researchers go ahead and use samples without getting proper permissions from those who contributed the sample, there are going to be great negative implications for science and for research. My work is looking at community perceptions about biobanking. Those perceptions can feed into policies, into guidelines, into ethical frameworks. This is what I am interested in strengthening: making sure the voices of those whom the samples come from have got a huge contribution on how biobanking pans out in the next 20, 50 to 100 years to come.

This interview was recorded in May 2019

Dorcas Kamuya

Dorcas Kamuya is the Chair of the Health Systems and Research Ethics Department at KWTRP. She conducts empirical ethics research examining if and how communities could be engaged on complex ethical topics. She is particularly interested in biobanking, and in the development of ethical frameworks on controlled human infections studies for LMICs.

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