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ADVANCE Discourse: Lab

Real Life Gattaca?

Published December 7, 2012 12:55 PM by Michael Jones

I remember studying genetics in high school biology and watching Gattaca (1997), which genuinely blew my mind. On its own, genome sequencing seemed like a concept that science ripped directly from the pages of fiction.  I could barely wrap my mind around it -- let alone the ethics of its practice. As technology continues to advance, genome sequencing is not only possible, but getting quicker, easier and more affordable for the average person.

A recent series on NPR examines the pros, cons and endless possibilities of inexpensive genetic sequencing in today’s society -- even discussing the potential for genetic discrimination in one article by Rob Stein, who authors the majority of the series. Apparently, he’s seen Gattaca too.

Science fiction writers, PhDs and journalists aren't the only ones speculating, either. The government also approaches the situation with caution. One story by Scott Hensey shed light on the Presidential Commission for the Study of Bioethical Issues (PCSBI), whose chairpersons composed a letter to President Obama suggesting, “strong baseline protections for whole genome sequence data to protect individual privacy and data security while also leaving ample room for data sharing opportunities that propel scientific and medical progress.”

Hensey expanded on other PCSBI ideas, such as federal and state laws “establish[ing] a ‘floor of privacy protections covering whole genome sequence data regardless of how they were obtained,’” “prohibit[ing] unauthorized whole genome sequencing without the consent of the person whose sample is being analyzed,” and ensuring a patient education prior to the sequencing about likely “’incidental findings’ in the results” that could be alarming. The consequences of these “incidental findings,” or “Incidentalomas,” lead to what could be the biggest question in the series: do we really want to know?

“A lot of people just don’t want to know that sort of thing, such as their risk for incurable diseases like Alzheimer’s and Huntington’s. Adults in large numbers choose not to know their status for those disorders,” says Benjamin Berkman, a bioethicist at NIH, in an article about possible genome sequencing at birth. “And so you could imagine a parent wanting to know whether or not their child is going to get Alzheimer’s and then telling the child at some point. But then, when the child is an adult, [this knowledge has] changed their life in a way that they wished they could have lived without [it].”

With emerging companies offering professional sequencing at a price that is becoming more affordable for the general public, it is impossible to ignore the issues surrounding the human genome. Referred to by Stein as a possible Pandora’s Box, the idea is presented as simultaneously exciting and terrifying.

Alan Guttmacher, MD, director of the National Institute of Child Health and Human Development, like many others, argues in the same article that the ends justify the means when it comes to genetic sequencing, optimistically speculating, “One could imagine a day where, knowing someone’s entire genome sequence at birth, you could really begin to think about structuring their healthcare, their dietary choices, their exercise choices… early in life, in a way that would have an impact on truly lifelong health.”

Medical research and treatment undoubtedly stand to move rapidly in new directions as a result of advances in genetic technology. The question that remains lies in the potential social impact of genome sequencing. How can geneticists, as Stein writes, “figure out how [to] make sure sequencing does more good than harm?” 

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