Science, Ethics, DNA and Privacy

The Havasupai Indians and Arizona State University settle a lawsuit over the dna research of blood samples from members of the tribe. This case raises ethical and legal questions about "informed consent" and the scope of research allowed on human specimens.

http://www.genomeweb.com/blog/informed-consent-and-havasupai-indians-lawsuit

Category:

People & Blogs

Tags:

• DNA
• Havasupai
• Arizona State University
• Diabetes
• Research
• Informed Consent
• Ethics
• Blood

[achampag]

we already knew that many tribes came from asia, so what was the point in presenting that? esp if that was not the aim of the study? imo, he should have had to get informed consent for the extra stuff he was studying, and then he should have had to get permission from whatever ethics board he was under.

[FantasticBabblings]

@achampag I think there was a lack of supervision here, certainly. But if scientists discover information and aren't completely open about it, doesn't that breed mistrust? What else might they hide and for what reason?

[Deldrone]

All truthful information should be exposed, regardless of who it hurts or angers. It seems quite simple to me. Flaws in the information should be picked out by other researchers and exposed as well.

We need to stop hiding the truth from each other. We simply can't afford to do this anymore, this practice has corrupted politics to the core and has upturned our economy.

[FantasticBabblings]

@Deldrone I agree with you in part, but for science to continue it needs the cooperation of people who volunteer themselves to be studied. We can't compel people to submit DNA. If scientists show a lack of sensitivity to the people they are trying to study, people will be less willing to volunteer.

I do think the truth is the truth regardless of feelings, but I think it some cases the way the truth is disclosed can be more compassionate.

[carehappens]

Thank you for touching on hiv however i don't believe hiv has been "isolated" in vitro meaning "isolated" and transferred to a monkey or human. If so I would really like a reference or the paper that says so. Hence the use of "antibody" tests which is in response to a theoretical virus which is too similar to many other viruses which many of are "dormant" until perhaps awakened by toxic or behavioral activities similar to a flare up of a herpes cold sore due to burning the candle at both ends.

[FantasticBabblings]

@carehappens For it to be transferred from in vitro to a human being would be highly illegal and unethical.

There are many, many papers regarding the in vitro isolation and study of HIV, but you are not going to accept them so why bother.

[faunflynn]

Scientific studies usually have ethical oversight these days and here in the UK people are pretty thorough about this stuff. As scientists we have an obligation to science, not peoples feelings cuz in the long run it may help people. Feelings can be born of transient social conditions.The fads and fashions of politics. They change, the science tends not to. ( But it can. ) It is a difficult area, and some medical ethecists can come across as a bit nutty, but who knows. Good post.

[DynaCatlovesme]

In a case like this, the best thing would be to perform the specific tests for which permission was obtained, and then have a protocol in place to document the destruction of all samples after the specific research is complete. There should, I think, also be a protocol for obtaining permission to retain samples for future study, giving the donor a full understanding that the nature of such studies is unknowable.

[audionautix]

Talk about ethics and DNA, just wait until insurance companies start testing for these markers at or before birth and make that information available among them.

People will start paying more for insurance simply because they have a higher propensity for cancer, alcoholism, etc.National healtcare has ushered this age right in the door.

[davidproper]

It seems they were most upset over being told what they believed to be their history was false. They were not as 'special' as they thought, in a way.

Don't think they had a claim. Heritage and breeding could well effect something like diabetes.

[uItravioIet]

Genetic material should never be studied without full consent. The samples should have been destroyed when the first study was completed. The student had no consent. He blatantly disregarded the privacy of the Havasupai by doing the study and then insensitively published damaging information that had nothing to do with its purported goal.

[qiranger]

I don't think they were. They signed the consent papers to allow research on the blood. Working with Native Americans in that region (and I suppose others) can be tricky due to beliefs. I remember several issues that came up while working for Northern Arizona University.

[fehquig]

I find it fascinating how much can be told about us from a blood sample... I also always thought that the pursuit of scientific enquiry was for finding out what the truth is, and to dispel myths and inaccuracies... In my opinion it's ludicrous that the university was sued.

[periurban]

I think there's a general principle on display in your story, which is that a scientific truth isn't always welcome. But should there be a pre-emptive sympathy to that likelihood? I don't think so. It's difficult to know whether or not the truth will be appreciated. Let the truth speak, and then deal with the issues it raises.

[macco360]

Great video. There is also a question of who owns the products of this research. If a new and lucrative cure is patented from a DNA sample, does the original provider or their relative have claim to some of the profits (assuming a waiver has not been signed)? There have been a number of cases that say no, but it is, as you point out, a growing field.

[anubis2814]

Excellent topic, it is sad that religion once again trumps the quest for truth.