The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Defining Incidental Findings in an Ethical Context

ParensDuring today’s meeting of the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission), Erik Parens, Ph.D., Senior Research Scholar at The Hastings Center, addressed the Bioethics Commission about the potential bioethical issues arising from whole genome sequencing, and how to define incidental findings–findings that are outside the aim of a particular test–in an ethical context.

Parens outlined important ethical questions related to incidental findings: Is some information potentially so beneficial that looking for it and returning it should be mandatory? Is some information too expensive to look for and/or return? Is some information potentially so harmful that looking for it should be prohibited? Are researchers under obligation to give results to research participants?

If the researcher is required to deliver the findings, argues Parens, then it should not matter if the findings delivered are incidental or not.

This becomes more complex during whole genome sequencing, however, when the amount of data being dealt with is so extensive. Parens noted that today’s technology, which can analyze huge swaths of data, is different from the technology used when the phrase “incidental finding” was first developed.  Today, when so much of the genome is being sequenced and so much data being gathered, is any finding truly “outside the aim” of the test?

In his presentation, Parens referred to the American College of Medical Genetics, which recommends that during genetic analysis, clinical laboratories analyze 57 genes that increase the likelihood of disease, and for which there is an intervention.

In these cases, where no finding is truly “incidental”, Parens proposes four new categories to continue to make distinctions between different types of findings:

  • Primary: The target of investigation is A and someone finds something relevant to A.
  • Incidental: The target is A, but one stumbles upon B.
  • Secondary: The primary target is A, but one looks for limited additional potential findings.
  • General: The purpose is to look for all findings, A thru Z.

Parens hopes that these re-categorizations will facilitate the understanding of the underlying ethical issues associated with incidental findings.

“If we were to continue on our current path, using “incidental” in an increasingly expansive sense, we could conserve some academic energy,” says Parens. “My concern, though, is that energy savings might come at too great an ethical cost: it might come at the cost of open and clear deliberation about what we are – and should be – doing.”

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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