Should AI Have Access to Your Medical Records? What if It Can Save Many Lives?

We’re constantly told that one of the potentially biggest benefits of artificial intelligence is in the area of health. By collecting large amounts of data, AI can create all sorts of drugs for diseases that have been resistant to treatment.

But the price of that could be that we have to share more of our medical information. After all, researchers can’t collect large amounts of data if people aren’t willing to part with that data.

We wanted to see where our readers stand on the balance of privacy versus public-health gains as part of our series on ethical dilemmas created by the advent of AI.

Here are the questions we posed…

AI may be able to discover new medical treatments if it can scan large volumes of health records. Should our personal health records be made available for this purpose, if it has the potential to improve or save millions of lives? How would we guard privacy in that case?

…and some of the answers we received. undefined

Rely on nonpartisan overseers

While my own recent experience with a data breach highlights the importance of robust data security, I recognise the potential for AI to revolutionise healthcare. To ensure privacy, I would be more comfortable if an independent, nonpartisan body—overseen by medical professionals, data-security experts, and citizen representatives—managed a secure database.

Anonymity cuts both ways

Yes. Simply sanitise the health records of any identifying information, which is quite doable. Although there is an argument to be made that AI may discover something that an individual needs or wants to know.

Executive-level oversight

I think we can make AI scanning of health records available with strict privacy controls. Create an AI-CEO position at medical facilities with extreme vetting of that individual before hiring them.

Well worth it

This actually sounds like a very GOOD use of AI. There are several methods for anonymising data which would allow for studies over massive cross-sections of the population without compromising individuals’ privacy. The AI would just be doing the same things meta-studies do now, only faster and maybe better.

Human touch

My concern is that the next generations of doctors will rely more heavily, maybe exclusively, on AI and lose the ability or even the desire to respect the art of medicine which demands one-on-one interaction with a patient for discussion and examination (already a dying skill).

Postmortem

People should be able to sign over rights to their complete “anonymised” health record upon death just as they can sign over rights to their organs. Waiting for death for such access does temporarily slow down the pace of such research, but ultimately will make the research better. Data sets will be more complete, too. Before signing over such rights, however, a person would have to be fully informed on how their relatives’ privacy may also be affected.

Pay me or make it free for all

As long as this is open-source and free, they can use my records. I have a problem with people using my data to make a profit without compensation.

Privacy above all

As a free society, we value freedoms and privacy, often over greater utilitarian benefits that could come. AI does not get any greater right to infringe on that liberty than anything else does.

Opt-in only

You should be able to opt in and choose a plan that protects your privacy.

Privacy doesn’t exist anyway

If it is decided to extend human lives indefinitely, then by all means, scan all health records. As for privacy, there is no such thing. All databases, once established, will eventually, if not immediately, be accessed or hacked by both the good and bad guys.

The data’s already out there

I think it should be made available. We already sign our rights for information over to large insurance companies. Making health records in the aggregate available for helping AI spot potential ways to improve medical care makes sense to me.

Overarching benefit

Of course they should be made available. Privacy is no serious concern when the benefits are so huge for so many.

Compensation for breakthroughs

We should be given the choice to release our records and compensated if our particular genome creates a pathway to treatment and medications.

Too risky

I like the idea of improving healthcare by accessing health records. However, as great as that potential is, the risks outweigh it. Access to the information would not be controlled. Too many would see personal opportunity in it for personal gain.

Nothing personal

The personal info should never be available to anyone who is not specifically authorised by the patient to have it. Medical information can be used to deny people employment or licenses!

No guarantee, but go ahead

This should be allowed on an anonymous basis, without question. But how to provide that anonymity?

Anonymously isolating the information is probably easy, but that information probably contains enough information to identify you if someone had access to the data and was strongly motivated. So the answer lies in restricting access to the raw data to trusted individuals.

Take my records, please

As a person with multiple medical conditions taking 28 medications a day, I highly endorse the use of my records. It is an area where I have found AI particularly valuable. With no medical educational background, I find it very helpful when AI describes in layman’s terms both my conditions and medications. In one instance, while interpreting a CT scan, AI noted a growth on my kidney that looked suspiciously like cancer and had not been disclosed to me by any of the four doctors examining the chart.

Must even steak be politicised? The American Heart Association recently recommended eating more “plant-based” protein in a move to counter the Health and Human Services Department’s new guidelines calling for more red meat.

Few would argue that eating a Big Mac a day is good for you.

On the other hand, growing evidence, including a study last month in the Journal of the American Medical Association, suggests that eating more meat—particularly unprocessed red meat—can reduce the risk of Alzheimer’s in the quarter or so of people with a particular genetic predisposition.

The APOE4 gene variant is one of the biggest risk factors for Alzheimer’s.

You inherit one copy of the APOE gene from each parent. The most common variant is APOE3; the least is APOE2.

The latter carries a lower risk of Alzheimer’s, while the former is neutral. A quarter of people carry one copy of the APOE4 variant, and about 2% carry two.

APOE4 is more common among people with Northern European and African ancestry. In Europe the variant increases with latitude, and is present in as many as 27% of people in northern countries versus 4% in southern ones. God smiled on the Italians and Greeks.

For unknown reasons, the APOE4 variant increases the risk of Alzheimer’s far more for women than men.

Women’s risk multiplies roughly fourfold if they have one copy and tenfold if they have two. Men with a single copy show little if any higher risk, while those with two face four times the risk.

What makes APOE4 so pernicious? Scientists don’t know exactly, but the variant is also associated with higher cholesterol levels—even among thin people who eat healthily.

Scientists have found that cholesterol builds up in brain cells of APOE4 carriers, which can disrupt communications between neurons and generate amyloid plaque, an Alzheimer’s hallmark.

The Heart Association’s recommendation to eat less red meat may be sound advice for people with high cholesterol caused by indulgent diets.

But a diet high in red meat may be better for the brains of APOE4 carriers.

In the JAMA study, researchers at Sweden’s Karolinska Institute examined how diet, particularly meat consumption, affects dementia risk among seniors with the different APOE variants.

Higher consumption of meat, especially unprocessed red meat, was associated with significantly lower dementia risk for APOE4 carriers.

APOE4 carriers who consumed the most meat—the equivalent of 4.5 ounces a day—were no more likely to develop dementia than noncarriers. (

The study controlled for other variables that are known to affect Alzheimer’s risk including sex, age, physical activity, smoking, alcohol consumption and education.)

APOE4 carriers who ate the most unprocessed meat were at significantly lower risk of dying over the study’s 15-year period and had lower cholesterol than carriers who ate less. Go figure. Noncarriers, however, didn’tenjoy similar benefits from eating more red meat.

The study’s findings are consistent with two large U.K. studies.

One found that each additional 50 grams of red meat (equivalent to half a hamburger patty) that an APOE4 carrier consumed each day was associated with a 36% reduced risk of dementia.

The other found that older women who carried the APOE4 variant and consumed at least one serving a day of unprocessed red meat had a cognitive advantage over carriers who ate less than half a serving, and that this advantage was of roughly equal magnitude to the cognitive disadvantage observed among APOE4 carriers in general.

In all three studies, eating more red meat appeared to negate the increased genetic risk of APOE4.

Perhaps one reason men with the variant are at lower Alzheimer’s risk than women is that men eat more red meat.

These findings might cause chagrin to women who rag their husbands about ordering the rib-eye instead of the heart-healthy salmon.

But remember, the cognitive benefits of eating more red meat appear isolated to APOE4 carriers.

Nutrition is complicated, and categorical recommendations—other than perhaps to avoid nutritionally devoid foods—would best be avoided by governments and health bodies.

Readers can order an at-home test from any number of companies to screen for the APOE4 variant.

The Swedish researchers hypothesize that APOE4 carriers may be evolutionarily adapted to carnivorous diets, since the variant is believed to have emerged between one million and six million years ago during a “hypercarnivorous” period in human history.

The other two APOE variants originated more recently, during eras when humans ate more plants.

APOE4 carriers may absorb more nutrients from meat than plants, the researchers surmise. Vitamin B12—low levels have been associated with cognitive decline—isn’t naturally present in plant-based foods but is abundant in red meat.

Foods high in phytates (such as grains and beans) can interfere with absorption of zinc and iron (also high in red meat), which naturally declines with age. So maybe don’t chuck your steak yet.