Ethics of whole genome sequencing are trivial? Slate sure thinks so….

Posted: January 10, 2013 in Ethics, Policy

I am currently in the process of moving apartments and working on a early February deadline for a grant, so sadly I don’t have as much time to commit to this blog post as I would like, but a recent article in Slate frustrated me so much that I felt it imperative that I bring it to your attention.

The article is titled, “It’s Time To Stop Obsessing About the Dangers of Genetic Information,” and was written by science writer Virginia Hughes, who has a bachelor’s degree in Neuroscience from Brown University from 2005. While I do agree that genetic testing and whole genome sequencing will open up a world of possibilities as far as early detection and planning for the future goes, the flippant way Ms. Hughes presents the situation is to me extremely irresponsible and potentially dangerous. I’ll first share a few choice quotes from the story, but I encourage you to read the entire piece.

“I’m sick of reading about the dangers of the genome.”

“The personal genomics horse has bolted, and yet many paternalistic members of the medical community are still trying to shut the barn door. In doing so, they’re fostering a culture of DNA fear when what we really need is a realistic and nuanced genetics education.”

“The public discussion about DNA testing tends to focus on ethical dilemmas: What if doctors find that a person’s father isn’t really? Should they tell a patient about a DNA glitch if it’s only occasionally linked to disease? What if, while looking for mutations that could explain a known sickness, they stumble on others that might predict late-life dementia or indicate the presence of HIV? Would adding this data to someone’s medical record affect health insurance rates? What if—gasp—we end up with a real-life Gattaca?”

“These questions are worth talking about. But the genetics community and popular press spend too much time debating when and how the medical establishment should “protect” people from their children’s or their own DNA.”

“Genetic screening, in other words, is getting more useful. And as it gets more accurate, yes, it is going to sometimes predict devastating diseases, and yes, cause some anxiety. And?”

“While wasting time debating ethical dilemmas, the medical community has neglected to talk about more pressing logistical problems: 1) How to ask people ahead of time what, precisely, they want to know (and don’t want to know); and 2) How to improve the medical system so doctors can follow through on those wishes.”

“There’s no way around the fact that genomes are complicated and, at least for now, difficult to interpret. And sometimes, yes, they will lead to unpleasant information. But they’re not going to suddenly fade away. More and more people are getting their DNA sequenced and eager to find out what secrets, if any, it holds. So let’s figure out how to tell them.”

So if I am understanding her correctly, Ms. Hughes belivevs that the real challenge we face when it comes to whole genome sequencing is the communication barrier between patient and doctor. While I agree that steps need to be taken and policy crafted to optimize how and how much of this sensitive information is relayed to patients, I do not agree in the least that these conversations are more important or should take a higher priority than that of the ethical and legal conversations surrounding this increasingly cheaper and more accessible technique. Yes, we have GINA, the Genetic Information Nondiscrimination Act of 2008, but seriously, do you really think certain insurance companies and employers will not find a “different” reason for not covering you or your loved one, or for not hiring/firing you or your loved one? Additionally, without policy in place, do we really trust for-profit companies such as 23andMe to do right by the human race, especially considering once this industry really starts to take off, a whole new field of governmental lobbyists will be created and unleashed? To me, an even bigger issue is the total unknown of how far whole genome sequencing will be able to go. Will we one day discover the gene(s) that render a person a sociopath? What about a serial rapist? If someone who is screened is found to have these traits, what should we do? Lock them up forever? Seeing as how most genetic mutations only increase or decrease the likelihood of a specific trait, and environmental factors play a huge role, what if that person only has a 25% chance of having a certain trait? Not to mention the ethical and legal issues that have already begun to arrise from whole genome sequencing of an unborn fetus.

Again, please don’t misunderstand me, I support and am excited for the possibilities when it comes to personalized medicine and genetic testing, but the apparent disrespect Ms. Hughes shows towards to awesome and frightening potential of whole genome sequencing scares me and makes me extremely anxious for the future. If people read articles such as these that paint whole genome sequencing as almost as trivial as a simple blood test, then I worry to see where we will end up 20-50 years from now.

I will admit, I have a tendency to be a bit conservative when it comes to releasing the awesome power of biotechnology onto the world. Am I being too conservative? Are these ethical dilemmas not dilemmas at all? Should the media and health care industry really turn their main focus to more logistical based problems?

  1. Nature this week has a great editorial commenting on the demand of Connecticut’s state medical examiner for a “full genetic analysis” of Netwon’s mass killer Adam Lanza. The editorial explains some of the ethical considerations regarding the results of this type of sequencing of people like Lanza.

    The editorial reads, “But there is a dangerous tendency to oversimplify, especially in the wake of tragedy. If Lanza’s DNA reveals genetic variants — as it inevitably will — people who carry similar variants could be stigmatized, even if those variants are associated only with ear shape. If Lanza has genetic variants already associated with autism or depression, people with those diseases could come under suspicion as well.”

  2. […] Ethics of whole genome sequencing are trivial? Slate sure thinks so…. […]

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s