Drinking from a Fire Hose

Dispatch from the fourth meeting of the Presidential Commission for the Study of Bioethical Issues (PCSBI) – Washington, D.C.

After releasing its report on synthetic biology, today the PCSBI took on a new topic: emerging diagnostic and predictive tools. In particular, they examined the science and ethics of genetic screening and neuroimaging. At the end of the day, Amy Gutmann, PCSBI chair, asked the assembled experts what single issue the commission should focus on and the overwhelming answer was “how should we deal with the impending flood of information spawned by these new techniques?” Who gets access? What uses are justified?

To put it in perspective, the costs of genetic sequencing are dropping so precipitously that on a logarithmic scale it makes Moore’s Law look like a gentle slope. Similarly, the technologies for imaging the brain are rapidly gaining in precision and dropping in costs – the emerging science of “connectomics” is mapping the “human connectome” or how different parts of the link-up and communicate with one another.

In short, we are going to be learning a whole lot more about ourselves and – especially in the case of direct-to-market genetic screening – the medical professionals are not going to be gatekeepers of this information. What do we do with this massive amount of information? The Genetic Information and Non-discrimination Act (GINA) makes it illegal to deny health insurance or employment on the basis of genetic information. But can this be enforced in an age when genetic information can be gleaned from a coffee mug? Speaking of that, what about forensic applications…should surreptitious collection of DNA evidence be a permissible law enforcement activity?

Oh yeah – and what if neorimaging got so accurate that it could predict who would become a psychopath? Should we screen all twelve year-olds and lock up the future perps? Or maybe just give them a scarlet letter?

One issue that dominated the agenda – and that was news to me – was “incidental findings.” Say you are looking for a gene related to metabolism and you happen to find the BRCA1 gene that has been linked to breast cancer. Or say you are scanning a healthy student’s brain with an fMRI as a routine part of a study and you notice an abnormality in the pre-frontal cortex. Does the researcher have an obligation to convey such information to research subjects? This situation blurs the traditional boundary between research and clinical care.

Francis Collins, director of NIH, was the first expert to testify and he closed with a quote from Albert Schweitzer: “We must not allow our technology to exceed our humanity.” He then had to rush off the next meeting presumably leaving the rest of us to figure out just when our humanity is threatened by the very technology he spends $32 billion every year promoting.

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