Policywise

Whom do we hold accountable in science?

Mark Felt, Sherron Watkins, Daniel Ellsberg – these are just a few of the many whistleblowers who’ve made an impact on U.S. history. These are people who took matters into their own hands when they recognized the unethical actions or plans of their companies, governments, and peers.

Whistleblowers have the option of exposing this wrongdoing either internally within their organization or externally through a third party such as the media, government, law enforcement, or others who are concerned. Regardless of the method, whistleblowers often face the risks of being perceived as an offender themselves.

However, there are many people who continue to speak out in corporations where the laws are clear as to what is deemed ethical and what is not. The question is, who do we put our faith in when the laws are not as clear to determine what is ethical?

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Emerging genetic technologies, such as CRISPR, have led to questions about what should be regarded as acceptable use.

Many are aware of the story of He Jiankui, the scientist who made the world’s first genetically edited babies last year. It was problematic because he performed this with ambiguous and misleading consent. The consent actually said that they would be conducting this as an “AIDS vaccine development project,” which was shown not to be the case.

What is also concerning is who else knew about He Jiankui’s intentions. He had collaborators and peers who knew about his experiments. Science Magazine noted:  “Ryan Ferrell, a public relations specialist He hired, has cataloged five dozen people who were not part of the study but knew or suspected what He was doing before it became public. Ferrell calls it He’s circle of trust.”

In the community of science, do we expect those in “circles of trust” to report what they believe is wrong? Is there a sort of bystander effect in the scientific community? Regardless of the answers, we should know from history that it’s necessary to rely on ourselves to call out wrongdoings of others because of the potential harm.

We may not yet have uniform laws or regulations that govern these technologies, but there are professional norms of conduct to think about in the He Jiankui case. The trouble is, we are not sure which norms apply in situations like this – and if they do apply, what mechanisms are in place so that individuals with knowledge about potential or actual unethical actions have a clear and protected path to report them?

It will take time for laws and regulations to fall in line after the China controversy. In the meantime, there are many individuals who use these technologies or know about those who do: collaborators, mentors, associates, journal editors, journalists, and reviewers, all of whom may have ethical obligations to report certain actions or intents.

We need to better understand and measure these obligations – whether they are weak, strong or compulsory – and provide processes and decision aids in order for the community of science to effectively regulate itself in the age of emerging genetic technologies.

-By Haley Manley, M.P.H., research assistant with the Center for Medical Ethics and Health Policy at Baylor College of Medicine

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