By Theo Schall

 

A recent New Yorker article tells the story of a group of Harvard genomic researchers who have been tracking the outbreak of Ebola in Sierra Leone. By sequencing the genomes of patients suspected to be infected with the Ebola virus, the scientists have been able to observe the virus’ mutation and its patterns of transmission.

 

Patients weren’t asked for their permission to use their blood samples. “We did everything we could to make no footprint in the way we took samples,” lead researcher Pardis Sabeti is quoted as saying. The specimens the team gathered were found in medical waste that would otherwise have been destroyed. The choice to gather samples without asking for consent was made with oversight from Institutional Review Boards at Harvard University and the Office of the Sierra Leone Ethics and Scientific Review Committee.

 

Compelled by a desire to help combat the Ebola crisis, the Harvard researchers posted their Ebola genome sequences online for public use. To be clear, they didn’t post genomic information about individuals and the data is nearly incomprehensible to the lay reader (see an example here.) Ultimately, the team published an article in Science describing their findings after they’d extracted 99 Ebola genome sequences from the blood of 78 Sierra Leonean patients.

 

The ethics of collecting biological samples for scientific research are challenging even when there isn’t a dire public health crisis unfolding. It’s difficult to use blood and tissue samples as raw, homogenized lab products when they say so much about who we each are as individuals. Participants in biomedical research have traditionally been protected through “de-identification,” a process of obscuring personal information (e.g., names, dates of birth) so identities are kept private. However, “de-identification” is controversial. The more we learn about analyzing genomic data, the less we can divorce a tissue sample from the person it came from. Ever since the human genome was sequenced, ethicists and scientists have worried that we already know too much to claim that biological samples can be kept truly anonymous.

 

What are the dangers of collecting data that can’t be kept anonymous? Genomes provide information about each individual’s proclivity for disease, personality traits, and behaviors, information that can be used as a basis for discrimination. Testing also often reveals unexpected information that doesn’t relate to the research question, called “incidental findings.” Incidental findings may have consequences for more than just the person whose tissue is used – family members share genomic material, so tests may inadvertently reveal things about whole families. Parents can be discovered to be adoptive or debilitating diseases can be uncovered without warning. Another challenge is our incomplete knowledge of most genomic idiosyncrasies – it’s difficult to predict what we’ll be able to do in the future and therefore hard to safeguard against misuse. The current best practices for genomic testing call for a careful consent process involving educating subjects in advance.

 

When compared to the Ebola outbreak, these dangers are minimal. Nonetheless, they will linger. This Ebola outbreak’s “patient zero” has already been publicly identified. News outlets have confirmed that the first Ebola patient was a two-year old Guinean boy who died last December. He is survived by his father and sister, whose names are readily available online. Many other early Ebola victims’ names have also been published in media outlets. These people and their families are not protected by anonymity and may be more vulnerable to the risks of genomic testing without consent.

 

Solving bioethical challenges usually requires balancing competing principles. In the case of Ebola, most people would agree that stopping the outbreak is more important than maintaining the privacy of research subjects. The choice to gather samples without consent was not just well-intentioned, but ethical. However, even in a public health emergency, it remains important that we carefully weigh the potential harms of new technologies against the potential benefits.

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