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If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

Created: 07/15/11

Replies: 10

Posted Jul. 15, 2011 Go to Top | Bottom | link | alert
admin

Join Date: 10/11/10

Posts: 369

Expert

If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

Deborah shares her mother's medical records with Skloot, but is adamant that she not copy everything. On page 284 Deborah says, "Everybody in the world got her cells, only thing we got of our mother is just them records and her Bible." Discuss the deeper meaning behind this sentence. Think not only of her words, but also of the physical reaction she was having to delving into her mother's and sister's medical histories. If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?


Posted Jul. 16, 2011 Go to Top | Bottom | link | alert
marthad

Join Date: 05/10/11

Posts: 25

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

If it were for medical research purposes and I consented first I would be fine with it.


Posted Jul. 16, 2011 Go to Top | Bottom | link | alert
lorie

Join Date: 05/19/11

Posts: 24

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

I think Deborah was appropriately cautious about sharing her mother's records, because her mother's privacy had already been terribly abused. It's particularly hurtful because of her mother's history with venereal disease, which I'm sure she wouldn't have wanted publicized. That being said, I would probably allow someone to look into my mother's medical records if it was to be used only for medical research and if I was assured that she would be kept anonymous.


Posted Jul. 16, 2011 Go to Top | Bottom | link | alert
marthad

Join Date: 05/10/11

Posts: 25

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

I agree with Lorie, anonymity would absolutely be key to my decision. I couldn't conceive of what Deborah must have felt with how her mother's privacy had been invaded.


Posted Jul. 16, 2011 Go to Top | Bottom | link | alert
dianel

Join Date: 07/16/11

Posts: 15

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

I can understand Deborah's reluctance. Her mother was not notified (nor her immediate family) that tissue samples were taken, nor were they told about the miraculous benefits that had been derived from them. I think Deborah is more upset that her mother has not been acknowledged by the biomedical field in proportion to the amount that her mother has positively impacted that field.


Posted Jul. 16, 2011 Go to Top | Bottom | link | alert
jop

Join Date: 07/16/11

Posts: 14

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

Deborah had the right instincts. I agree that privacy is the issue here. One is protecting the person whose records are being examined, as well as the family.


Posted Jul. 16, 2011 Go to Top | Bottom | link | alert
BarbW

Join Date: 04/09/11

Posts: 13

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

Dianel, I think you've hit the nail on the head. I think Deborah was most upset because her mother wasn't getting the 'credit' she and the family felt was due her.


Posted Jul. 17, 2011 Go to Top | Bottom | link | alert
Dottie S

Join Date: 07/17/11

Posts: 6

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

I would be horrified, as Deborah was, particularly because her mother,s privacy had been violated. But Deborah is dealing with a very complicated and disturbing situation, one that she barely understands : the discovery of how her mother suffered and died, the new knowledge of her sister's disappearance and how she must have suffered, learning about her mother's venereal disease, as well as the fact that some people profited enormously from the Hela cells. This family deserves compensation, and it is not too late, even now.


Posted Jul. 21, 2011 Go to Top | Bottom | link | alert
kathrynk

Join Date: 05/21/11

Posts: 31

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

The statement "...only thing we got of our mother is just them records and her Bible" seems to be spoken in anger and disappointment in what she experienced when finding out what happened to her mother. The ripples that came from how Henrietta was treated however, became devastating waves that tore through the family. The request for records then would seem to me like pouring salt on an open wound-- adding insult to injury. Its difficult as a white woman, growing up in a middle class community, to imagine what any of what happened would be like. I have had good health care my entire life! I choose my own doctors -- go without referral -- and just get the attention I need. That this happened is repugnant to me.

If seeing my mother's records would help someone or the medical community in treating others, I would have absolutely no objection. But i do feel strongly that we do have the right to confidentiality. To be treated differently because of race was wrong -- and in my mind, it still is.


Posted Jul. 25, 2011 Go to Top | Bottom | link | alert
karlas

Join Date: 10/21/10

Posts: 5

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

I would be suspicious of anyone I didn't know wanting to look into my mother's medical records. Having strangers ask questions would make me feel that there was an invasion of privacy. At this time we have a right to confidentiality. Back when Henrietta was going through the treatments Johns Hopkins had ethical standards even if they were not spelled out by laws.


Posted Jul. 25, 2011 Go to Top | Bottom | link | alert
marcias

Join Date: 07/25/11

Posts: 5

RE: If you were in Deborah's situation, how would you react to someone wanting to look into your mother's medical records?

I respect Deborah's feelings. Personally I wouldn't object to my mother's medical records being explored. When my father died I agreed to an autopsy. I was young and surprised that other older family members were unhappy about the autopsy. My feeling was that the autopsy might help others down the road. Deborah may have been angry too because she had been kept in the dark about her mother's illness.


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