Bioethics Discussion Blog: The Health of an "Important Person": Should It be Revealed?

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Friday, January 16, 2009

The Health of an "Important Person": Should It be Revealed?

Yes, we all know about HIPAA regulations with regard to the restriction of patient medical information but how far does any limitations of public dissemination go with regard to the health of an "important" person. Read this brief article in today's New York Times regarding this very issue as it applies to Apple's Steve Jobs. What defines an "important person" (any business man who runs a public shares company? A well-known movie or sports star? A candidate for a public office or one who is already in public office? A scientist who is on the verge of discovery? A physician in active medical/surgical practice? An airline pilot? .. and so on), Who sets the limits of personal medical information which must be disclosed? Is there a Consitutional basis for this relaxation of personal privacy? Is there any ethical argument against it? ..Maurice.

3 Comments:

At Saturday, January 17, 2009 4:52:00 PM, Blogger Joel Sherman said...

It's a long established legal issue that so called public people are entitled to less privacy. That's how tabloids publish all kinds of garbage about celebrities. They couldn't do it about me because I'm not a 'public' person.
You'd have to ask a lawyer what the legal reasoning behind this is. The ethics of it is a different question.

 
At Saturday, January 17, 2009 9:59:00 PM, Blogger Maurice Bernstein, M.D. said...

It is interesting that the disclosure of personal medical information to the public may be done for altruistic reasons: to educate the public about an illness and encourage public interest in supporting research for a cure.

One classic example of such a disclosure was that of former President Ronald Reagan's Alzheimer hand-written letter to his "Fellow Americans" on November 5 1994. The following text of the letter is from Wikipedia

..Maurice.

Nov. 5, 1994

My Fellow Americans,

I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's Disease.

Upon learning this news, Nancy & I had to decide whether as private citizens we would keep this a private matter or whether we would make this news known in a public way.

In the past Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures we were able to raise public awareness. We were happy that as a result many more people underwent testing. They were treated in early stages and able to return to normal, healthy lives.

So now, we feel it is important to share it with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.

At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done. I will continue to share life's journey with my beloved Nancy and my family. I plan to enjoy the great outdoors and stay in touch with my friends and supporters.

Unfortunately, as Alzheimer's Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage.

In closing let me thank you, the American people for giving me the great honor of allowing me to serve as your President. When the Lord calls me home, whenever that may be I will face it with the greatest love for this country of ours and eternal optimism for its future.

I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.

Thank you, my friends. May God always bless you.

Sincerely,

Ronald Reagan

 
At Saturday, January 17, 2009 10:27:00 PM, Blogger FridaWrites said...

In our local newspaper, a commenter discussed how shareholders have a "right" to know more about Jobs' illness and whether he plans to return to work. While I'm sure most of us are curious, it is not our right. I am always appalled how the health records of political candidates and sports figures are hauled out and openly discussed. I don't quite understand people's feelings that they have a "right" to know. The particulars of Jobs' illess aren't relevant--maybe whether he plans to return to work is relevant, but I am assuming he does not know either.

Everyone deserves medical privacy. I really believe this. The more disabled I am, the more other people feel they have the right to question or even interrogate me about my illnesses/disability--purely to satisfy curiosity. I don't mind discussing with friends, but with other people--I'd like to forget!--there are other things to talk about, and when I can get out--I'd rather be thinking about other issues.

 

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