Arthur T Knackerbracket has processed the following story:
Over the past couple of weeks, I’ve been following news of the deaths of actor Gene Hackman and his wife, pianist Betsy Arakawa. It was heartbreaking to hear how Arakawa appeared to have died from a rare infection days before her husband, who had advanced Alzheimer’s disease and may have struggled to understand what had happened.
But as I watched the medical examiner reveal details of the couple's health, I couldn't help feeling a little uncomfortable. Media reports claim that the couple liked their privacy and had been out of the spotlight for decades. But here I was, on the other side of the Atlantic Ocean, being told what pills Arakawa had in her medicine cabinet, and that Hackman had undergone multiple surgeries.
It made me wonder: Should autopsy reports be kept private? A person’s cause of death is public information. But what about other intimate health details that might be revealed in a postmortem examination?
[...] The goal of an autopsy is to discover the cause of a person's death. Autopsy reports, especially those resulting from detailed investigations, often reveal health conditions—conditions that might have been kept private while the person was alive. There are multiple federal and state laws designed to protect individuals' health information. For example, the Health Insurance Portability and Accountability Act (HIPAA) protects "individually identifiable health information" up to 50 years after a person's death. But some things change when a person dies.
For a start, the cause of death will end up on the death certificate. That is public information. The public nature of causes of death is taken for granted these days, says Lauren Solberg, a bioethicist at the University of Florida College of Medicine. It has become a public health statistic. She and her student Brooke Ortiz, who have been researching this topic, are more concerned about other aspects of autopsy results.
The thing is, autopsies can sometimes reveal more than what a person died from. They can also pick up what are known as incidental findings. An examiner might find that a person who died following a covid-19 infection also had another condition. Perhaps that condition was undiagnosed. Maybe it was asymptomatic. That finding wouldn't appear on a death certificate. So who should have access to it?
The laws over who should have access to a person’s autopsy report vary by state, and even between counties within a state. Clinical autopsy results will always be made available to family members, but local laws dictate which family members have access, says Ortiz.
Genetic testing further complicates things. Sometimes the people performing autopsies will run genetic tests to help confirm the cause of death. These tests might reveal what the person died from. But they might also flag genetic factors unrelated to the cause of death that might increase the risk of other diseases.
In those cases, the person’s family members might stand to benefit from accessing that information. “My health information is my health information—until it comes to my genetic health information,” says Solberg. Genes are shared by relatives. Should they have the opportunity to learn about potential risks to their own health?
This is where things get really complicated. Ethically speaking, we should consider the wishes of the deceased. Would that person have wanted to share this information with relatives?
It’s also worth bearing in mind that a genetic risk factor is often just that; there’s often no way to know whether a person will develop a disease, or how severe the symptoms would be. And if the genetic risk is for a disease that has no treatment or cure, will telling the person’s relatives just cause them a lot of stress?
[...] Ideally, both medical teams and family members should know ahead of time what a person would have wanted—whether that's an autopsy, genetic testing, or health privacy. Advance directives allow people to clarify their wishes for end-of-life care. But only around a third of people in the US have completed one. And they tend to focus on care before death, not after.
Solberg and Ortiz think they should be expanded. An advance directive could specify how people want to share their health information after they’ve died. “Talking about death is difficult,” says Solberg. “For physicians, for patients, for families—it can be uncomfortable.” But it is important.
(Score: 4, Funny) by c0lo on Monday March 24, @03:10AM (3 children)
Always keep the data private if the patient survives autopsy. (:grin:)
If s/he doesn't, s/he won't care anyway. Do share any infectious disease, otherwise maybe ask the family, I s'pose; or just "Fuck it, I'm not paid enough" and go on with your life.
https://www.youtube.com/@ProfSteveKeen https://soylentnews.org/~MichaelDavidCrawford
(Score: 0) by Anonymous Coward on Monday March 24, @03:17AM
> Always keep the data private if the patient survives autopsy. (:grin:)
Well, the *family* presumably survives the autopsy, so perhaps it should remain somewhat private.
Not like any of it will ever avoid the massive over-reach of the government's genetic profiling though. 123andme, every hospital everywhere (have you ever had a genetic test? count on the gov having it), coroners, ...
(Score: 3, Insightful) by DannyB on Monday March 24, @01:51PM (1 child)
It is more important to keep it anonymous rather than keep it private. There may be important medical information worthy of publication. But names don't need to be revealed. It is possible to simply publish obscure details. It was a middle age woman. (born aug 2, 1977, Lockjaw KY, with last name starting with B and ending with Y)
The Centauri traded Earth jump gate technology in exchange for our superior hair mousse formulas.
(Score: 2) by JoeMerchant on Monday March 24, @05:12PM
There are accepted protocols for de-identification of medical data.
The same de-identification protocols used to protect health information in life should be perfectly acceptable to protect health information after death.
Some of those protocols require aggregation of data in order to mask identifying details. So, if cause of death is released as Hanta virus, then the rest of that Hanta virus autopsy results would wait until a certain number (statisticians gonna play, but call it 100) of other Hanta virus autopsy results have been collected to release the aggregate data.
🌻🌻🌻 [google.com]
(Score: 3, Funny) by Anonymous Coward on Monday March 24, @03:31AM (3 children)
DOGE, of course!
In these times privacy is an anachronism. Forget about it.
(Score: 5, Insightful) by pTamok on Monday March 24, @08:34AM (2 children)
Privacy for individuals is almost becoming illegal. "You have nothing to fear if you have nothing to hide." which leads to the invalid conclusion: "If you are hiding something, you are guilty of something."
There appears to be at least two aspects to this:
1) Prejudice against the sick, which leads to people wanting to conceal conditions that are embarrassing for them.
2) People using health information against you: for example, to increase health-insurance premiums.
There is also the issue that your health records can lead you to being identified for other purposes: if you have broken your right arm, for example, this will show up on an x-ray for as long as your skeleton lasts, which means that if you are being searched for in a group of people, the searchers can eliminate all those with unbroken right arms. This might seem minor, but if your government turns against you, maintaining anonymity can be life-critical.
There is also the need to distinguish between privacy and secrecy. People know what a toilet is for, but you don't necessarily want people watching you. What you do is not secret, but you would like it to be private. So unless you are not against toilets with transparent doors, you are in favour of being able to choose privacy for some things. Some people don't care, but are likely in a minority.
Privacy is also about trust: you trust your doctor and your bank separately with different information that you typically would not share with your next-door neighbour, so that information is not secret, but it does have a level of privacy associated with it. The medical information in the original article is the kind of thing people tend not to want to share, so I would think it is reasonable for responsible, trusted people to have access to it, but prurient media interest is not a sufficient cause. However, if you cease to trust 'the authorities' not to cover up things that they shouldn't, you can see why people might want openness. It ought to be sufficient to say that the police and the coroner have investigated their deaths, and foul play has been ruled out. Unfortunately, people don't trust such statements these days. Why that is is a whole other discussion.
(Score: 2) by JoeMerchant on Monday March 24, @05:22PM (1 child)
>Prejudice against the sick, which leads to people wanting to conceal conditions that are embarrassing for them.
While I sympathize,
A) society needs to decide: are we going to take the infirm, elderly, and genetically different, and anyone who is just too weird, out and shoot them, or are we going to treat them compassionately as human beings, as we would want to be treated were we in their place? My take: as a society we are not so stretched and poor that we should be considering killing our weak just so we don't have to waste resources on them. Locking them away in a closet, or institution, or prison, only increases the suffering AND expense. Anybody who is secretly gloating about the increase in suffering can f-ing well exercise your 2A rights, get yourself a nice 9mm Glock with a box of hollowpoints and remove yourself from future discussions, permanently.
B) Assuming A) doesn't become a problem (which, recent news would suggest that things are trending in that direction, so... what I thought about this six months ago is admittedly evolving), being embarrassed about your condition not only leaves you suffering in isolation, it also prevents efforts to help you and people with similar conditions who are also suffering.
If we all parade around with the stiff upper lip pretending everything is tip top, not a worry, the downstream costs of that denial will be huge.
🌻🌻🌻 [google.com]
(Score: 3, Insightful) by gnuman on Monday March 24, @09:18PM
In the time that US is being taken over by fascists ... the above statement even sounds like something they would like to talk about.
https://www.bbc.co.uk/ouch/fact/the_holocaust_and_disabled_people_faq_frequently_asked_questions.shtml [bbc.co.uk]
https://www.facinghistory.org/resource-library/unworthy-live [facinghistory.org]
― Thomas Jefferson, Works of Thomas Jefferson.
(Score: 3, Insightful) by HeadlineEditor on Monday March 24, @01:19PM (2 children)
... but I'm glad I'm not the only one asking the question, because I was thinking the same thing when the news stories came out. Like, just because they're dead now everybody can see every prescription and health condition they had? That ain't right.
(Score: 2) by Thexalon on Monday March 24, @04:43PM (1 child)
Context matters though.
For instance, if the autopsy is being performed on a public figure, and there are conspiracy theories starting to form involving foul play, an autopsy explaining "Hey, this is what the medical examiner can say about what happened, and here's why while it sucks it was probably nobody's fault but a whole series of bad luck" might tamp down those conspiracy theories at least somewhat.
Whereas if the autopsy is being performed on a regular person like, say, me, there are going to be a few people who care but probably not a whole cottage industry of parasites ready to tell bonkers stories about it for clout or cash (barring some really juicy true crime elements of the case of course).
"Think of how stupid the average person is. Then realize half of 'em are stupider than that." - George Carlin
(Score: 1) by khallow on Tuesday March 25, @01:45AM
Keep in mind this can be a crazy problem: for example, Pizzagate started as a wild rumor that a Washington, DC pizzeria had a child porn ring running out of its basement. This led eventually to someone shooting up the pizzeria in a "self-investigation" [wikipedia.org] of the place.
There will be conspiracy theories, of course. But with an official autopsy describing plausible causes of death, I think it likely that the family can keep these theories from going viral, greatly reducing the number of crazy people they will need to deal with over the years.
(Score: 2) by turgid on Tuesday March 25, @03:48PM (1 child)
Does this mean the whole world gets to find out about my piles when I go?
I refuse to engage in a battle of wits with an unarmed opponent [wikipedia.org].
(Score: 2, Funny) by khallow on Tuesday March 25, @04:03PM
You mean, after we do a self-investigation in force, will the whole world find out about the evil government conspiracy to do you in and cover up the murder with this hemorrhoid hoax? You bet!