Letters from the week of June 10, 2004

 Private Practice
Patients and prudence: Rarely am I ever so moved by an article that I feel I must write in, but your story on the Havasupai really touched me ("Indian Givers," Paul Rubin, May 27).

I am a registered nurse and have been in the operating room for 12 years. Before that, I worked on various nursing units. Although I'm from Indiana, I am a traveling nurse currently on assignment in Phoenix.

Confidentiality, privacy and respect for the patient have always been a very, very big deal in any facility I have ever been associated with. We always have to be careful when discussing our patients -- never in elevators or the cafeteria, where issues of privacy would be of concern. It is, and always has been, a fireable offense if caught disrespecting a patient.

And this was before the federal Health Insurance Portability and Accountability Act of 1996.

Have you paid a visit to your doctor, clinic or hospital lately? The first thing you will be asked is to sign a two-page form, which basically says that the health-care provider will keep information about you confidential, and that the provider will honor the HIPAA's dictates.

When I picked up your article, I just couldn't believe it. I hope they throw the book at ASU and anyone else associated with this disgraceful lack of respect, disregard for the law (lack of informed consent) and the continuing pervasive lying and covering up. What a travesty of justice was perpetrated against the Havasupai.

It's interesting to note that such things never seem to happen to, say, a group of kids in summer camp out East whose parents are doctors or lawyers. Just a short way into your article, I immediately thought of the Tuskegee Experiment, too. Some people just think that because people are poor or a little less educated, anything can be done to them. It's sickening.

Thanks so much for this wonderful article enlightening the general public that such abuses still go on. Hopefully, your article and the bad publicity it brings ASU (all rightfully deserved) will make others, and other "researchers," think before they just barge ahead and do as they please.
Name withheld by request

Tribal damages: I read with interest the "Indian Givers" article. It seems that Carletta Tilousi is all too happy to stir this issue in the interest of her own political aspirations. The article did not point out if any laws were broken.

In 1991, we did not have strong medical privacy laws. Although it would seem that ASU is guilty of poor screening of researchers and poor documentation procedures, I am still perplexed by the standard lawsuit. I cannot understand what the tribe's damages could possibly be.

Are the Havasupai concerned that research on these samples might result in concrete evidence that they are not an indigenous people?

It would seem to me that the much bigger issue here is one of bioethics. We live in the DNA age. Perhaps the highest and best good that might come of this is to make our lawmakers aware of possible abuses in the biogenetics field. You may have noticed that the standard blood drawing for life insurance applications has been replaced by an agent-administered cheek swab by some insurance companies.

This should be a procedural wake-up call for ASU, but yet another lawsuit? I say give the blood back to the tribe. Unfortunately, the real casualty here is the Havasupai, since now, they refuse to participate in studies that could be of great help to tribal members.
Christopher C. Happ, Glendale

Frankly, she just doesn't give a damn: I read your article and was horrified. I am Cherokee and live in New Mexico. I knew Mike Lacey when he started the paper and still enjoy it. Your reporting on the Havasupai has left me filled with revulsion, and I hope that you will do follow-ups on what becomes of the lawsuits.

I think such travesties are what continues to this day to impede honest researchers from being welcomed by indigenous peoples worldwide. I wonder if Dr. Terri Markow is so culturally insensitive that she just doesn't get it. Or is it that she just doesn't give a damn?

I'm indebted to you, as are many native peoples, because of your article.
Jim Harlin, Gallup, New Mexico

Cooking the books: Anyone who has had casual contact with Native Americans understands how their spirituality and belief system are centered on their relationship to the Earth and sky.

I think ASU is shameful. It borders on how the academic community is so focused on how much fame the researcher can achieve.

Many years ago, I worked at two different teaching institutions. I became friends with an M.D./Ph.D. clinician who once spent hours telling me about the high-level "cooking" of data for research. He indicated that the money chase is amazing since there are many research grants -- including from government, teaching institutions and corporations. The money, and, more important, the desire for ego satisfaction, drives this behavior.

Many studies are not able to be replicated, and the researchers know this. The result is that they can create results that are reported both in academia and the media.

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