Rethinking consent in ancient DNA research: Who decides for the dead?

Victoria Gibbon, University of Cape Town; Jessica C. Thompson, Yale University, and Sianne Alves, University of Cape Town

Would you choose to have a part of your body live on after you died? How might your choice affect your relatives – or even your entire community?

The first is a question people face when they donate organs. The second comes up when they participate in genetic research. This is because DNA from even a single individual can reveal a web of relationships, even helping law enforcement to solve crimes committed by distant relatives they have never met. And as you continue to go back in time, the web becomes ever more tangled.

DNA is the unique genetic material of every living being on the planet. It can be “immortalised” for an unforeseeably long time in digital genetic libraries, which contain the genomic information not only of that person, but also their ancestors and descendants.

Ancient DNA (referred to as aDNA) involves the study of genetic material from organisms that lived long ago, including humans.

Geneticists, archaeologists, anthropologists and historians are using DNA research to gain unprecedented insights into human history, but the knowledge benefits different groups of people unevenly.

Also, it can be destructive because aDNA is normally extracted from small samples of bones or teeth. And who can give permission on behalf of people who lived many generations in the past? Once spoken for, what measures can be used to ensure their wishes continue to be honoured?

Africa is the ancient origin of all humans, as evidenced by having the highest human genetic diversity of any continent or region found today. In other words, all humans carry DNA from a deeply rooted shared African ancestry.

This makes African DNA (ancient and modern) a rich resource to draw on to understand what makes us human. However, understanding human variation and our origins involves research embedded within living communities, and communities are the solution to conservation and the future of work in our disciplines.

Once it is decoded, the genetic information can last forever, so it could be used by anyone, for any purpose, for generations to come. Companies in the pharmaceutical industry, for example, could use it.

As this science advances at an astonishing pace, ethical and legal frameworks guiding it struggle to keep up. No country has standards applying specifically to the field of aDNA. Therefore, ethical guidelines appropriate for this work need to protect past, present and future generations.

Consent is not yet universally mandated nor typically obtained in aDNA research, despite growing awareness of its importance over the past two decades. What is more, the concept of “informed consent” as developed in the clinical medical world is deeply rooted in a Western idea of individual autonomy. It assumes that most medical decision-making occurs by individuals, rather than communities. And there are challenges applying it to people who are no longer alive.

That’s why, in our recent paper, we argue for using “informed proxy consent” or “relational autonomy consent” in human aDNA research.

This is when living people through relation and/or relationship to a deceased person or people can make decisions and provide consent on their behalf, as a proxy or stand-in. The relationship could be through gender, race, religion, sociopolitical or sociocultural identities, or biological.

Other Topics To Read

• Africa
• DNA
• Genetics
• Ancient DNA
• Genetic diversity
• research consent
• DNA research
• Rethinking consent in ancient DNA research: Who decides for the dead?
• Headlines

DNA is also susceptible to data mining, machine learning and statistical analysis to uncover patterns and other valuable information. The deceased may be represented by living people who are affected by the research.

Different social, political, cultural and economic contexts make it impossible to create a universal set of specific guidelines. But four principles can apply: honesty, accountability, professionalism, and stewardship.

In our paper, we outline a set of considerations for obtaining proxy-informed consent for the long deceased. A system of consent could enrich research by using it in potent new ways, empowering people affected by research, protecting researchers from ethical breaches and building long-term, equitable partnerships.

The solution

We propose that consent for the use of human aDNA in research should be a community-driven process. Instead of individuals signing off on behalf of the deceased, living people connected to the deceased persons, whether through ancestry, geography, cultural knowledge, or custodianship, act as representatives.

This recognises that people are part of communities, and that authority to consent must reflect social and cultural context, not just individual choice.

This kind of approach was applied in South Africa’s Sutherland Nine Restitution, when nine San and Khoekhoe ancestors were taken from their graves in the 1920s and sent to the University of Cape Town for medical education and research. Almost 100 years later, they were finally brought home to their community.

In the Malawi Ancient Lifeways and Peoples Project, one way archaeological research results are communicated to community members is through site visits such as the one below, which included traditional authorities, local and national government officials, academics and students.

Community consultation became so normalised through this work that some traditional leaders began to ask researchers how aDNA might aid their own goals of restitution and historical reconstruction.

How it would work

One major lesson from studying the past is that things can change a lot. We do not expect that there will be clear cultural or biological continuity in every place or every time. And identifying appropriate descendant communities and determining who has the authority to consent can be complex.

But local communities are often invested in research results, and they have a right to high-quality information about its consequences. Consent should be treated as a process, not a one-off event.

This begins in the planning stage, with researchers sharing a draft proposal and revising it based on community input.

They must be transparent about who is funding the project, what techniques will be used and what the possible risks and benefits are. This is not only for science, but for the people connected to the deceased persons.

Clear communication is vital, and information should be provided in local languages and formats that are easy to understand. Communities should be given time to reflect without researchers present.

Feedback must be taken seriously, and projects adapted accordingly. Crucially, communities need to retain control over how data is stored, used and shared.

Finally, engagement should continue throughout the life of the project. Researchers should share findings before publication and return for fresh consent if using data in new ways.

***

Victoria Gibbon, Professor in Biological Anthropology, Division of Clinical Anatomy and Biological Anthropology, University of Cape Town; Jessica C. Thompson, Assistant Professor of Anthropology, Yale University, and Sianne Alves, Director office for inclusivity and change, University of Cape Town

This article is republished from The Conversation under a Creative Commons license. Read the original article.