The Ethical Quandary that is the Consumerization of Genetic Health

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The dawn of the genetic health revolution has arrived and people are… worried.

At Medullan, we interact with a lot of folks who have been genetically sequenced, who are thinking about getting genetically sequenced, or who manage health plans full of folks who might get sequenced. And when I chat with some of our clients (and with experts in the genetic health arena, too), I hear a lot of the same alarmist worries over and over again: If you know too much about what could go wrong in your body, you could do dangerous things. What’s next, designer babies? Is it safe to allow people to take health decisions into their own hands, outside of communicating with their physicians? And what about folks who have existing mental health conditions? Could new health “flags” scare people into making crazy and dangerous decisions?

The biggest worry I hear is that a consumer might get access to their genetic information, see a high risk area, and then decide to undergo a costly and body-altering preventative surgery, a la Angelina Jolie, without consulting a physician first.

From my perspective, these are all valid worries. We need to be cautiously optimistic about genetic medicine and the incredible places it could take us.

These new technologies are inarguably amazing: the pool of data we’ll be able gather about genetic disorders will teach us an incredible amount about existing conditions, and the fact that consumers can have more control over their personal health outcomes is fantastic. But we also need to take careful steps forward, especially around communicating genetic data to consumers.

First, I think we need to talk quickly about what we might be getting ourselves into when we take these cautious steps forward:

Why now? As per usual, the answer to this question largely comes down to cost. During the past year or so, an inflection point has been reached for consumer genomics, an industry led by companies like 23andme, which allows consumers to order a genetic report, usually sent to their home, about their genetic sequence and potential health risks. In just a few years, genomics has shifted from a topic of lab research only to a precision medicine tool geared at consumers. Now, a consumer can have access to their genetic line up for as low as $199 per test. And even ordering extensive genetics lineups has become more affordable, with costs hovering at around $2,000 per test.

It’s also important to acknowledge that we’re talking about two groups when we talk about the consumerization of genetic health.

The first group is consumers who are interested in their genetic data from a solely recreational perspective. These consumers are the people in your family who geek out about the family tree, and the people who are naturally curious about science. They want to know where they came from, and they want to know about certain traits: how fast they metabolize certain foods, for example, or what tastes they hate and why. These folks often order low cost, “genetic gateway drug” tests from places like 23andme or ancestry.com to get access to small genetic line ups that feed their curiosity.

The second group of consumers are those who want medically actionable genetic data. These consumers are usually perfectly healthy, but they want to learn more about what they can do to stay healthy for a long time. They want to be aware of what’s to come for them health-wise, and these folks might want to take action to prevent certain disorders which they might be more susceptible to (this could be as simple as wearing more sunscreen, or as drastic as undergoing a preventative mastectomy). These consumers can order more extensive tests from places 23andme, which will still give them a large portion of the data they’re interested in, or they can ask a physician to request a complete genetic sequence as well.

This is where the ethical grey area comes knocking.

If consumers order medically actionable data from a source like 23andme, and that data arrives without any kind of interpretation from an experienced medical professional alongside it, the consumer could make decisions based on their perceptions of the data - and those decisions could be unwise. However, some data has also shown that even ordering those tests with your physician isn’t that much better, as most family medicine doctors aren’t trained in genetics, either.

To me, there are two short term solutions here.

First, genetic counselors. I’m always fascinated when new professions rise to the surface of the medical world, and genetic counselors are one of the most needed and impressive at this point in time. Genetic counselors are trained in exactly this grey area. They’re taught to walk consumers through genetic line ups, and to help them make decisions in a way that feels human and medically actionable. This is a no-brainer to me: every clinic that orders genetic tests needs a genetic counselor, and every company that processes genetic sequencing should provide consumers with access to a genetic counselor as well.

Second, we need to design better user experiences. We’re always talking about design over here at Medullan, but design is incredibly key to this kind of data experience. Right now, when consumers order their genetic data, the results are usually sent as digital reports. A common trend has been presenting physicians and consumers with entire genomic “browsers,” but these can be difficult to navigate, even for physicians, as they can contain hundreds of data points.

We’re working now on designing a few applications with clients that will walk folks through their genetic data in a conversational way, eventually pairing them up with a genetic counselor. But ultimately, we’re hoping that genetic testing companies universally move toward presenting data in an approachable, digital way that includes easily understandable language and graphics, and the appropriate dissemination of the right information to the right people at the right time.

The bottom line is that we’re just getting started with ethical quandaries of genetic health.

Is handing consumers this information the right thing to do? I’ll cautiously say yes. Because the opportunities in this area are so vast, I believe that it’s well worth navigating ethical gray areas with caution and integrity. But we must take every step carefully, relying on experts, like genetic counselors, to call out danger and opportunity areas when they arise.


 View our past webinar on the topic

Written By:
Rebecca Lord
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