Q&A: Kári Stefánsson Says Medical Privacy Is Overrated

Our reluctance to share our medical data isn’t just preventing breakthroughs, it’s “morally unacceptable”

2 min read
Illustration of Kári Stefánsson.
Illustration: Jacob Thomas

human os icon

img Illustration: Jacob Thomas

Iceland’s Decode Genetics wants to sequence the DNA of the country’s small population—about 320,000 people—and match it with a rich genealogical record and national health databases. But not everyone is keen on giving up their genetic secrets. Decode’s founder and CEO, Kári Stefánsson, thinks people should stop worrying about privacy and start thinking about curing disease.

IEEE Spectrum: What’s the main challenge to gathering massive amounts of genetic and personal data to make medical discoveries?

Kári Stefánsson: The biggest problem has to do with privacy. The probability that anyone will use data like these to hurt people is extraordinarily small. It is just the perception that is somewhat troubling. When you go to the hospital or to your doctor, the probability that the health care system can help you is based upon the fact that those who came before allowed information about themselves to be used to make discoveries. I think it is completely unacceptable that you could demand service from the health care system at the same time as you refuse to have your information used to make discoveries.

So privacy concerns get in the way of medical breakthroughs?

Our queasiness when it comes to use of data is making discoveries more difficult [and] more costly. We have to find a way of convincing people that this is one of their duties in society, to allow information about themselves to be used in the context of medical research.

In an ideal world, would Decode have unfettered access to all Icelanders’ genomes? All humanity’s?

We don’t have unfettered access to anything. All of our access is controlled by our National Bioethics Committee and our Data Protection Authority. We are tightly controlled, and we should be. Over the past 18 years, not a single data point has ever leaked out of this building. No one has ever been hurt by the data we have gathered. The only thing we have done is to make discoveries that shed light on the nature of disease, on the nature of the human condition in general. So when you are weighing the risks against the benefits, this experience is extraordinarily valuable.

This article originally appeared in print as “Is Privacy Overrated?”

About the Author

Dave Levitan is the science writer for FactCheck.org, where he investigates the false and misleading claims about science that U.S. politicians occasionally make. For this issue, he traveled to Iceland to interview Kári Stefánsson of Decode Genetics, who would like to capture the DNA of Iceland’s entire population. Although Stefánsson is a neurologist by training, he has the charisma of a successful politician, Levitan notes. “A big chunk of that population seemed to describe Stefánsson as a ‘character’—affectionately, of course.”

The Conversation (0)

Windows 11 Is Here, But Will It Run on Your PC?

Some of the actual beta testers will now have to downgrade to Windows 10

3 min read
Harry Campbell

Microsoft's Windows 11 is awesome. It also abandons millions of users.

The latest version of Microsoft's 36-year-old operating system began its rollout on 5 October 2021. Some eligible devices may not receive it until mid-2022. Still, there's a chance your PC will have the update by the time you read this.

If you have a new PC, that is. Windows 11 is a free upgrade, but in a break from past releases, Microsoft will exclude hundreds of millions of PCs that run Windows 10.

Keep Reading ↓ Show less

Drones to Attempt Rescue of Starving Dogs Stranded by Volcano

Authorities have granted permission for a drone company to try to airlift dogs on La Palma to safety

3 min read
Left: Leales.org; Right: Cabildo de La Palma en directo

For the past month, the Cumbre Vieja volcano on the Spanish island of La Palma has been erupting, necessitating the evacuation of 7,000 people as lava flows towards the sea and destroys everything in its path. Sadly, many pets have been left behind, trapped in walled-off yards that are now covered in ash without access to food or water. The reason that we know about these animals is because drones have been used to monitor the eruption, providing video (sometimes several times per day) of the situation.

In areas that are too dangerous to send humans, drones have been used to drop food and water to some of these animals, but that can only keep them alive for so long. Yesterday, a drone company called Aerocamaras received permission to attempt a rescue, using a large drone equipped with a net to, they hope, airlift a group of starving dogs to safety.

Keep Reading ↓ Show less
Mercer

Your career is like your life. It evolves in stages, each of which looks unique and has distinct needs. Wherever you are in your career, the IEEE Member Group Insurance Program is designed to offer solutions geared for your needs – today and tomorrow, too. Early Career. Mid Career. Late Career. Post-Career/Retirement. Whoever you need to protect — yourself, your family, or your business partners/employees — we’re your resource for insights and options.

Trending Stories

The most-read stories on IEEE Spectrum right now