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Posted on July 2, 2019 at 12:26 PM

Written by Julian Savulescu

Today, the Journal of the American Medical Association published an article entitled “Three Identical Strangers and The Twinning Reaction— Clarifying History and Lessons for Today From Peter Neubauer’s Twins Study” written by Leon Hoffman and Lois Oppenheim.  It provides background to a documentary, Three Identical Strangers, which gained a lot of attention earlier in the year into “the lives of Edward Galland, David Kellman, and Robert Shafran, triplet brothers who stumbled upon each other in their college years and enjoyed a brief period of celebrity before emotionally confronting the implications of their separation.” One triplet ultimately committed suicide.

The triplets were part of a covert research study by child psychiatrist Peter Neubauer who followed them up for many years to study gene-environment interactions in triplets separated at birth. The article alleges that Neuberger was wrongly blamed by the triplets and film makers for their separation at birth. The authors argue it was “Viola Bernard, then a prominent child psychiatrist from Columbia University and consultant to a now-defunct adoption agency” who was responsible for their separation because she “believed that children born of the same pregnancy and placed for adoption would fare better if they were raised by separate families.” The authors review some evidence from the child development literature at the time that supported the idea that twins or triplets would fare better if adopted, experiencing less sibling rivalry and having greater access to parental resources.

Importantly they argue that Bernard and Neubauer acted independently of each other. Moreover, the secrecy was required by laws at the time. “It was illegal at the time of the study to provide information about biological families to adoptive parents, a practice that did not begin to be modified until the late 1970s and 1980s.”

Hoffman and Oppenheim conclude:

“So the study was ethically defensible by the standards of its time—principles of informed consent and the development of institutional review boards lay in the future.10 However, these documentaries demonstrate how unsatisfactory that defense is to the study’s families who live with its legacy.

The films’ message for today’s child specialists and researchers is thus something other than their surface themes of outrage and restitution. They rather provide an unusually dramatic example of the potential for harm from human participant research, even if only observational.”

I would like to draw four other lessons from this episode.

  1. More Research

Paradoxically this is a call for more but better research – research that would have stopped the separation. This was introduced on the back of a fad, or ideological thinking and was not systematically or properly studied (for example, such research might recruit twins who had anyway had to be separated in childhood for other reasons). If proper research had been conducted earlier on the separation of twins and triplets, maybe this separation would never have occurred. There is a moral imperative to conduct research on hypotheses, no matter how well-intentioned or plausible they might sound. Until you do the research, you can’t know whether the intervention will do more harm than good, or whether the status quo is better than some available alternative.

A current contemporary example is drug policy and decriminalization of some recreational drugs. Instead of doing ongoing research on the best policy to promote human welfare, participants on both sides of the debate assert their approach is the right one. Instead, we should do carefully conducted research or design interventions with audit, being prepared to revise our policy in light of emerging evidence with the possibility even of reversing it.

  1. The Right to Know

Researchers were wrong not to disclose the conduct of their research (even if the law required it). People have a right to know if their data or they are a part of research project. To use people without informing them is to treat them as a mere means. It is to demean them, to treat them as less than individuals.

But it is important to realise this isn’t a thing of the past. Today, Facebook, Instagram and Google have been accused of conducting research without informing people in a comprehensible and intelligible way. One striking example was Facebook’s experiment manipulating people’s feed to receive more positive or more negative emotional content and measuring the change in the emotional tone of their own content. The paper was later updated with an explanation that the authors’ University ethics committee had not reviewed the project because, as the study was undertaken by Facebook for “internal purposes” it fell outside of their remit. There was no explicit consent process for the study, and users did not know that they were enrolled. Participant consent was taken to be in the terms of the Data Use Policy, which is agreed to as part of sign-up terms and conditions.

There is no way of knowing what research is taking place on these kinds of platforms. The Cambridge Analytica scandal, where a company harvested Facebook data to create profiles of millions of Facebook users and their friends via a free quiz, and used it for political advertising, shows that this data is useful for a number of ends, including political. There is no requirement for the research to be aimed at understanding and promoting human wellbeing.

  1. More Medical Research

While social media has essentially free reign over our data in many parts of the world, often without our knowledge for purposes that are not necessarily in our interests, medical research is now tightly regulated and controlled. There are much higher standards now applied to medical research because of abuses like this than in order social life and this now hampers research. In some ways, the pendulum has swung in the other direction when it comes to medical research. Numerous precise consents are required just to use data that is generated in the normal course of the medical encounter which makes research difficult or impossible to implement.

Big data provides enormous opportunities for research. We need to get more and more information about people, drugs, behaviours, etc to design better health care and life. But people also need to understand and have appropriate control. We could use new technologies like Block chain (the technology used in cryptocurrency transactions by Bitcoin) to achieve this or create new entities to protect people by providing anonymised data (Sebastian Porsdam Mann, Julian Savulescu, Philippe Ravaud & Mehdi Benchoufi, Blockchain, consent and prosent for medical research, in progress).

  1. Ethics Is NOT Relative

Hoffman and Oppenheim conclude that the research was ethical by the standards of the time. But this is misleading. The standards of the time and the research were both unethical. It was no defense of Nazi practices that they were ethical for their culture. It is no defense of slavery that it was just ethical for its time. It was not ethical that women did not have the vote in the 19th century. Ethics is not relative to time and culture.

What this shows is that we have made ethical progress. Bernard and Neubauer acted wrongly but sometimes it is difficult or impossible to act ethically. But rather than being sanctimonious about ourselves and critical of the behaviour we should look at our own behaviour. In 50 years, it is possible that future people will look at our treatment of nonhuman animals, particularly in agriculture, just as we now look at the slave owners of the 19th century.

We should put the microscope not on these historical actors but ourselves. How confident are we that we are not the Bernards or Neubauers of our time?

Thanks to Sam Wong from New Scientist for drawing my attention to this article. His New Scientist article gives further analysis.

 

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