Should a son have the legal right to know his absent biodad's PCa history?

I happened to come across this family situation on a health discussion forum the other day, in which the poster was asking:

"My husband's biological father has never recognized him, never spoken to him, never acknowledged him. As a child, my husband was adopted by his step-father, and has never had a need for anything from his biological father or asked for support in anyway. But I'm now pregnant, and we're interested in knowing something about the paternal side of my husband's family. Do we have any rights to access such information? I believe that when my husband was officially adopted by his step-father, the biological father signed a form that gave up all rights."

The answers given to the poster were almost all saying, as this one did:

" ... no one has any legal access to anyone's medical records, except parents in the case of their minor children."

and the only positive advice offered being:

" ... try and contact other members of his family and see if they can give you any information."

I did a little further checking myself, and this does seem to be the way the law on this is set up, that children attempting to find out health issues, especially genetic ones, about the biological father they may have never even known, and who may be long gone, may have a hard time in doing so.

While this question of access would apply to the dad's health in general, for our purpose, as the thread title indicates, we're talking about any PCa history the dad may have had.

Especially if it was a serious case. Clearly, it would be in the son's best interest to have knowledge of this when making his own future health plans and decisions.

The HIPAA Privacy Rule seems to be the legal framework here, and from what I have read it does appear to come down, for the most part, on the side of the person whose records are being sought. Even biological children are restricted from access to those records, if the biological parent objects, or is unavailable to allow access.

But is this fair? As noted, a son would unquestionably benefit from learning about his biological father's experience with PCa, enabling him to better prepare his own strategy for possible future dealings with the beast.

But if the current legal hurdle of limiting the son's access to this information applies, should the law be changed?

Should children have the legal right to demand such health information from absent biological parents, assuming they know who and where those parents are, and said parents must then legally provide that information to them?

This is a question that deserves an answer, as the family situation described above is becoming all too common these days, and many children are growing up not knowing what health issues they may have inherited from a biological father who is no longer around, if the current laws continue to apply.

Where should the line come down between a child's right to know what parental health factors, especially genetic ones, may be determining his own health future, and the absent parent's right to privacy?

Where do you think that line should be?

81GyGuy said...


Should children have the legal right to demand such health information from absent biological parents, assuming they know who and where those parents are, and said parents must then legally provide that information to them?

No. It's a slippery slope and we already give up too much privacy in my opinion.

Jim

Agrent, HIPAA rules are also used by medical professionals so as to NOT have to relay information, even when the patient has named you as someone to whom they can disclose. When my dad was undergoing treatment for lung cancer, the local hospital made a huge mistake. When my mom and I questioned what had happened, they refused to give us any information, citing HIPAA. We were both named as his POA, and as his healthcare representatives on his Advance Directive. Prior to the screw-up, the doctors and nurses talked openly to both of us.

If the legal relationship between parent and child has been broken, the child should not have the right to data.

I have a same situation in my distant family. A do-gooder judge opened records, and an older child (put up for adoption at birth) decided he needed to be an active part of his "new" family. Let's just say that the family wanted nothing to do with him, and eventually had to get restraining orders. The police were called when he decided to start showing up at funerals.
In his case it turned out that the father was unidentified, so would not have helped him in a PCa case.

But I've seen the chaos that can come from getting ones nose up in the wrong place.

My answer is no, he has no right.

Oh man, those HIPPA laws. I work for an organization that involves a lot of client personal health information, and we spend a lot of effort being certain we have permission to release a client's information - regardless of the requester's relationship to the client. It's not uncommon for inexperienced employees to inappropriately share client information with a family member. It may seem like harmless information, but without explicit permission from the client, we can't even acknowledge that we provide services to them. Sometimes the HIPPA laws impede coordinaton of client care, but I think they provide an important layer of privacy protection. I would answer no to the OP's question.

BTW, the fines for HIPPA violations can be quite severe for both the employee and the employer.

I feel somewhat uniquely able to respond to this question. I'm adopted.

Many a time have I wondered about my biological family and their medical history, at least when I was younger. Not knowing was a source of wonder or worry depending upon what was going on. Upcoming physical, aches and pains out of nowhere, allergies, my birthday, PCa... my daughter's Type I diabetes...

My (adoptive) father's advice on things medical was, "Go to the doctor not the ER unless it's an actual emergency. Keep regular appointments for physicals. Understand what the doctor is telling you. Research to the level of your ability to understand and then have an expert explain it to you. Ask questions. Seek second opinions if you feel it's needed."

I've never missed a physical. I inform myself, understand MY body, ask questions and get experts involved when appropriate... like when at 41 I was told I had PCa.

While I've been tempted to open Pandora's box and find my biological family, I'm confronted by many personal, philosophical dilemmas: Are they interested in knowing me? Am I interested in HAVING them know me? Am I really interested in knowing them? Once the seal is broken on the info, it flows both ways.

Being completely forthcoming, my adoptive family had enough issues with dynamics and interpersonal relationships that I wasn't willing to open another potential can of worms. I've moved on from most of it now, but the idea of fitting into something just wasn't appealing to me, so I've not pursued trying to find my biological parents or family.

I equate it to this... I haven't done the gene study that tells your susceptibilities to disease and illness. I figure if I keep the path my dad set for me... go to physicals, talk to the doctor.... I'll figure it out from there. If a gene study tells me I'm susceptible to this or that, am I going to do anything BEFORE it appears?

I live a pretty healthy life. Don't eat badly. I drink beer and, Heaven forbid, have a dessert on occasion, but I'm not unhealthy. I've even been known to exercise. Yet, I don't feel compelled to know what MIGHT happen to me. I think I'd worry about it. Wait for it to happen.

I have three great kids and a wonderful wife. We're doing well. I leave it at that.

I was contacted by a love child I had never known or seen. I felt it was my duty to tell them about all of my health conditions that they wanted to know. And also that it is a one way street. I gave up any and all rights and I have no right to know anything about them. But that is just me.

142 said...
There is also something to be said for the fact that my cousin went to another town / state, carried the child to birth, then put him up for adoption. There were other options that would have left him not present to care.

Yet he still came to harass the family in their old age.

...and it's for this reason that I elect to keep the doors shut, 142.

Now, if it was a life and death situation for one of my kids, I guess I might reconsider and proceed differently. But I think I would begin by getting the gene mapping before I went directly to do something to find the biological family. There's a large part of me that believes that family history may not be as important to the treatments of anything as it once might have been.

mentor5959 said...

wow

seems to me a no brainer that medical records of a parent should be available to offspring
i can't for the lief of me understand why one would object

specifically, what are you worried about?
(what is it I am missing?)

Wow is right but the other way around in my opinion. I can understand if a parent wants to share info with a non-legal but biological offspring but I would never presume to think that the offspring has the "right" to get that information. Our rights to privacy seem to have been diluted over the years but these rights are still instilled in the amendments to the constitution as well as the well know HIPPA laws. To say nothing of the can of worms such disclosures can open up as 142 described above. Anyway, as far as privacy goes, consider this which may be a little OT but is at the heart of my objections to the required divulging of medical information:

The right to privacy often means the right to personal autonomy, or the right to choose whether or not to engage in certain acts or have certain experiences. Several amendments to the U.S. Constitution have been used in varying degrees of success in determining a right to personal autonomy:
• The First Amendment protects the privacy of beliefs
• The Third Amendment protects the privacy of the home against the use of it for housing soldiers
• The Fourth Amendment protects privacy against unreasonable searches
• The Fifth Amendment protects against self-incrimination, which in turn protects the privacy of personal information
• The Ninth Amendment says that the "enumeration in the Constitution of certain rights shall not be construed to deny or disparage other rights retained by the people." This has been interpreted as justification for broadly reading the Bill of Rights to protect privacy in ways not specifically provided in the first eight amendments.
The right to privacy is most often cited in the Due Process Clause of the 14th Amendment, which states:
No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.

Food for thought as I answer another call from a telephone scammer who has some of my personal info and is trying to trick me into giving him the rest so he can drain my bank accounts...

Jim

Tudpock, I didn't want to quote your whole post...

I think the way it would work is if I wanted the information from my biological parents I would have to petition to unseal my adoption records. But by merely unsealing them, I think they would have to "consent." In other words, the two way street would require they be notified of my desire to unseal the documents and would have to agree to them being unsealed. At least that's the way I've always understood it. I have never received any form of notification that they desired to find me, so I assume there's no desire from that end. But I've always been told that the process had to start with me, so there's no way they could actually find me without me getting the ball rolling.

Evidently, even back in the 1960's, there were strict rules/laws that kept the identities of the adoptive and biological parents secret. I remember my mother telling me that she worried until about 3 months after my adoption that I would be returned. I assume that after that point, everything was considered final and that all of the privacy laws came into play.

I shudder at the notion that a man I never knew would suddenly arrive at my door, announce he's my biological father, and proceed to tell me his medical history. I guess I could handle it, but I would be put off completely at him showing up uninvited a week later to have a beer with me. Seems like 142 experienced something like this.

Many people, including my wife, don't understand why I'm so wary. I'm sure there are many people who think they are doing a favor to one side or the other by breaking these rules in the misguided desire to reunite people so they can live happily ever after. Even in the case of medical need, I think privacy is more important.

Following up a bit more on the legal aspect of this, the primary legal question here is, specifically, would a child be able to successfully sue a parent who is not interested in providing his medical history, and legally force that parent to do so?

The link below is to a page on a legal-type website that discusses a legal situation almost identical to the type of thing we are discussing here, except that it involves a woman with a heart condition, seeking information from her father, who is unwilling to give it.

Granted it's only a bit of legal thought expressed on one website, but the response on that page to the question raised, presumably by legally-trained people who would know what they are talking about, is very consistent.

That is, all the respondents there are saying NO, that a child will not be able to legally force a parent to provide any personal medical history, even when there is an argument that knowledge of a genetic condition of paternal origin may be helpful to the child.

What they are saying is that the parent's right to privacy supersedes the child's right to know.

https://www.thelaw.com/threads/subpoena-dads-med-history-for-genetic-illness.74317/

Courts favor genetic history if health questions are at stake.

In the end, it really doesn't matter. A doctor is going to treat a patient (or recommend treatment) based on the symptoms and tests results presented.