Genetic Privacy

New report from the Presidential Commission for the Study of Bioethical Issues.

It’s called “Privacy and Progress in Whole Genome Sequencing.” The Commission described the rapid advances underway in the field of genome sequencing, but also noted growing concerns about privacy and security. The report lists twelve recommendations to improve current practices and to help safeguard privacy and security, including using deidentification wherever possible.

Here are four news articles.

Posted on October 17, 2012 at 6:23 AM20 Comments


mdb October 17, 2012 7:04 AM

Maybe they should regulate next. Just as much genetic info can be deduced from that data. This is really just stupid. Genetics will give you risks, it is rarely a diagnosis (when it is a diagnosis, unless it is a mutation – your family tree will have the info as well)

Clive Robinson October 17, 2012 10:22 AM

Lets be honest here who actually thinks that US big Pharma and US Insurance companies won’t get all the rights they want to your private data be it genetic or otherwise?

@ MCB,

The “risk” information it will give an individualy is minor compared to the exemptions etc the Insurance industry will put on individuals. They will analyse any data they can get there hands on to look for any kind of faux evidence to increase their profits.

As an indicator of this look at the BMI there is no scientific evidence that the simple curve it produces is in any way a real fit to the reality of an individuals risk.

Someone October 17, 2012 2:56 PM

If insurance is a way of collectivizing risk, then I don’t think it’s necessarily unfair to expect people who are statistically going to be pulling more money out of the pool to also put more money into it.

Unfortunately, medical insurance isn’t actually insurance (or at least not JUST insurance). Which makes things a whole lot more complicated…

Winter October 18, 2012 1:23 AM

“If insurance is a way of collectivizing risk, then I don’t think it’s necessarily unfair to expect people who are statistically going to be pulling more money out of the pool to also put more money into it.”

If you already know who will need a payout in the future and who does not, there is no insurance possible/needed.

A solution to this problem of real, unavoidable risks in health care is to ignore the individual risks and make insurance obligatory.

Everybody could have had the bad genetics/accidents that leads to bad health and disease. Therefore, everybody has to take insurance and pay the premium. This solution is used in various European countries. With the most famous example being the NHS in the UK.

Note that this solution gets rid of most of the incentives for employers and insurance to mess with your privacy. It is also cheaper than the USA solution (USA healthcare seems to be the most expensive in the world).

Winter October 18, 2012 4:35 AM

“Another solution is to make medical insurance optional.”

Which is what the USA has now. Which leads to massive privacy intrusions.

It also leads to more people without medical care the better we can predict disease. In the end, when we can predict disease perfectly, there will be no medical insurance anymore.

David October 18, 2012 5:45 AM

{political rant}

USA healthcare seems to be the most expensive in the world

It would seem that the more Government involvement there is in health care, the cheaper it is! Just look at UK, Australia et al.

Hint: business needs to make a profit; public utilities simply need to stay within a budget. Presumably that’s why the TPP negotiations show a desperation to shut down Australia’s Pharmaceutical Benefits Scheme which (in effect) limits the amount the government will pay for medicines. If you’re too expensive, we won’t pay!

{/political rant}

Clive Robinson October 18, 2012 6:01 AM

There are pros and cons to medical care and how you pay for it. However people must remenber that it is a true “social good” not what many regard (mainly for political mantra) as a hand out to the indolent and work shy.

This is because an avoidable unhealthy population even in part is bad for all partly because it causes transmissable disease to spread more easily but also because it causes an increase in crime, discrimination and other social ills that effect ALL of society.

The flip side of discriminatory health care ends up with eugenics which was quite popular with the so called “intelegensia” prior to WWII, and believe me it was not just the fascists that practiced it or were in favour of it, most continental Northern European nations practiced eugenics in one form or another and the UK’s Winston Churchill was known to be keen on it as were quite a few US politicos.

A fast genetic test will undoubtadly bring back eugenics to the table be it directly or indirectly through triage etc.

However one thing is certain however you fund health care it needs to be properly ring fenced from politicos and others who see it as a cash cow to use as they please.

Have a look at what has actually happened with the monies paid into social care or social security in most countries and you will find what is in effect serious fraudulent miss use of the monies.

mdb October 18, 2012 7:49 AM

@Clive Robinson

Have you ever given your doctor your family history? Guess what? The insurance company probably already knows your genetic weaknesses, because you gave it to them. Really just relax.

Clive Robinson October 18, 2012 9:23 AM

@ mdb,

Have you ever given your doctor your family history? Guess what? The insurance company probably already knows your genetic weaknesses

No I’ve not and have no intention of either.

And as I’ve never had “health insurance” nor do I want it even when it’s being given for free by an employer I guess they don’t know any genetic weaknesses if I even have any (which we probably all do but hey what you don’t know etc etc)

The reason I don’t have “health insurance” is simple I read the legally required (in the UK) small print, and I have absolutly no intention of signing away my rights to keep aspects of my private life private and away from very very dubious US data agrigators who belive they have an absolute right to pry as and when they feel like it. Only a fool would sign such a faustian contract…

But as far as I can gather in the US you legaly have no choice (if you are employed) unless you are sufficiently rich and healthy such that you don’t need health insurrance.

paul October 18, 2012 11:25 AM

Anybody who says that it makes sense for people to get their prices for buying insurance now (and remember, that’s the only way it works — you can’t wait and charge people later) based on their genetic risks is in ethical quicksand. But more than that, they’re effectively declaring that no progress will be made henceforth in medical research.

It’s a certainty that some conditions that are currently very expensive to treat will become much cheaper in the future (we just don’t know which ones or how long). And a strong likelihood that some conditions that are currently very cheap to treat (because we can’t do much, and the conditions are either not too debilitating or rapidly fatal) will become very expensive to treat. And yet another certainty that many, many subtle genetic linkages have yet to be discovered, so that someone who is today classified as low-risk could the day after tomorrow become high, and vice-versa.

All of these likely shifts pose huge personal risks and risks of distorting markets and research. So maintaining a rawlsian “veil of ignorance” makes sense not only from a moral point of view but also as the best way to foster progress and working markets in healthcare and medical products.

tommy October 21, 2012 2:37 PM

One fact that hasn’t been fully appreciated in the debate about genetic information is how difficult it is from a statistical perspective to fully “disidentify” things like disease risk. Time and again, we’re told that this or that genetic database doesn’t look for functional markers so it’s no big deal to collect the information and keep it on file.

Now imagine that I don’t know whether you carry a gene for sickle cell anemia, but I do know you have, say, a sub-Saharan mtDNA or y-DNA haplogroup. I can then compute the risk that you will carry the sickle cell allele over and above someone who doesn’t have a sub-Saharan haplogroup. Long isolation among racial or ethnic groups makes it difficult to entirely hide statistical relationships between genes and there are bound to be countless correlations in such data. They could be of real interest to people like actuaries.

Kathleen Hobson October 30, 2020 3:31 AM

I was always interested in learning the story of my kind, but I was a teenager and did not understand anything about it. Now I have grown up and took this issue more seriously. I believe that everyone should know the origin story of ancestry research, and it’s also very exciting and informative. I liked the article which talks about the problems that can get in your way during this process. This is a very difficult task indeed, especially if you have to do all the research yourself.

Anonymous December 3, 2023 1:45 PM

“Gene freak characters might also have developed personality quirks or aggressive behavior from years of social rejection.”

-Shadowrun Augmentation

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