9 May 2019

Mariëtte van den Hoven and Catrin Finkenauer on ethics within science

Three Identical Strangers asks questions about unethical research

Three Identical Strangers - Dutch trailer

This week sees the Dutch premier of the documentary Three Identical Strangers, a shocking documentary about identical triplets Edward Galland, David Kellman and Robert Shafran, who were unaware of each other's existence but met by chance. [Spoiler alert from here up to the end of the article.] Without the triplets and their adoptive families' knowledge, they were separated as part of a scientific study into nature versus nurture. We spoke to ethicist Dr Mariëtte van den Hoven (Philosophy), specialised in professional ethics, and Professor Dr Catrin Finkenauer (Interdisciplinary Social Science) from Dynamics of Youth about this documentary and about ethics within science.

BASIC RULES OF ETHICAL RESEARCH

 

Identieke drieling, Edward Galland, David Kellman en Robert Shafran. Bron: YouTube (still)
Identical triplets Edward Galland, David Kellman and Robert Shafran. Source: YouTube (still)

According to Mariettë van den Hoven, there are two basic rules for ethical research: “People always have to volunteer to participate in research and give their consent. The second rule is that you may not harm people. The first basic rule was clearly violated with the study of these triplets, as they were unaware and not even capable of giving consent when they were used as test subjects. The second is up for debate, but the psychological damage you can sustain from being separated from your biological brothers and not knowing your past can be immense.”

You have to be careful of what you can or can't ask children and it also depends on the context

RESEARCH ON CHILDREN

Research on children is even more sensitive, according to Van den Hoven: “We even didn't allow it for medical research for a long time. The rule is that it has to be important research for the children themselves, that they personally benefit from it during their childhood, or that it's beneficial to the patient group the child belongs to in general. You have to be careful of what you can or can't ask children and it also depends on the context."

SERVE A GREAT INTEREST

Isolating children in their social environments, such as at school, and make them do tests can have social consequences that children can experience in very severe ways. “Think of bullying. It's the same with MRI research on children: putting a child in a tube and having them carry out tasks is just more intense for a child than it is for an adult patient. The default remains: don't research anything if it's not really needed. It's the researchers' task to show that it serves a great interest,” Van den Hoven states.

You need active consent from parents these days, and that's needed in many cases to prevent practices such as in that study of the triplets. However, I think it's also needed to consider whether or not parental consent has to be more nuanced in some cases.
Catrin Finkenauer
Eeneiige tweeling © iStockphoto.com
Identical twins © iStockphoto.com

PARENTAL CONSENT

Catrin Finkenaur sees other dilemmas in research involving children: “While the main focus with participation is on the parents, because parents need to give active consent in most cases involving children under the age of sixteen, I think you can ask questions about this ethical default. You need active consent from parents these days, and that's needed in many cases to prevent practices such as in that study of the triplets. However, I think it's also needed to consider whether or not parental consent has to be more nuanced in some cases. Due to my research into child abuse, genetics and the consequences of divorce, I've started to have more doubts about the active parental consent. Sometimes, parents and children can have different opinions, a child wants to be able to say things that parents don't like and sometimes, participation in research can be seen as a contribution to a socially important topic.”

CONTROVERSIAL RESEARCH

Could this kind of research still occur today? According to Van den Hoven, many things have already changed: “The excesses of the Second World War were a direct reason to set up ethical rules for research on humans, in which doing no harm and voluntary participation are the ground rules. Ethical rules were also made stricter in the 1970s, after a whistle-blower reported in the New York Times on a study of black men in Tuskegee that had already been going on since 1932. These men were not informed that they had syphilis and that there were treatments for that, which is completely immoral. That doesn't mean there are no more controversial research projects these days, because in countries were ethical reviews are less well set up, all kinds of things can still be researched under the radar. Controversial research of any nature can always occur, as long as there are big interests at stake and people find possibilities for it.”

© iStockphoto.com

ROLE FOR EDUCATION

So how can we prevent unethical research then? Van den Hoven sees a big role for education: “We must make researchers more and more aware of what is ‘good research’ and why it's important to know why this is the case. For instance, they also need to consider when test subjects are needed and to what limit they can be questioned. With that, you'll hopefully develop a way of thinking that will result in people being less prone to do controversial research within universities. Due to the continuous intake of new researchers and the developments in science, such as the possibilities to experiment with genetically modifying humans, there's also the necessity of a continuous quantity of education in ethics and integrity.”