Patients Bill of Rights

[vlhperry]

Someone felt a need to repost a thread from last May which started with a synopsis of a conference by a member of this forum which turned into a hot and heavy debate about patient's rights in research.

In that thread I argued that patients need their rights protected and listed several ways that research was abused. I want to set it straight that I never said not to participate in research. Just be sure you know what you are signing on for and the reason the research was done. I stated that the typical contract stating, "expect no direct benefit from participating in ________________ . The research is being done to benefit mankind." was no longer acceptable to many patients.

I, personally, have signed on for a research program with this stipulation. I was told I would not be given any of my personal information. I believe in this particular study this is wrong, however: It is important enough to participate in now, in order to benefit others in the future. I will continue to try to advocate against keeping this particular type of research out of the patient's knowledge about his disease. The importance of participating in this study now, outweighs my objection to not being allowed to know my personal results. If we refuse to participate in any research because it goes against our personal beliefs, it will only lengthen the time to reach a cure.

Just to Clarify,
Vicky

[jeanb]

Thank you, Vicky.

A group of patient-advocates led by the Parkinson Pipeline Project and PDF are working on a clinical trial participants' bill of rights. It has been mentioned before in this forum, but it is an important effort and document, and deserves to be mentioned again.

DRAFT:

The purpose of the Parkinson’s Clinical Trial Participants’ Bill of Rights is to:

Acknowledge the rights people with Parkinson’s (PWP) have when participating in clinical research trials.

Educate everyone with a direct interest in these trials about standards that will improve the overall clinical research process, increase clinical trial participation, and help speed discovery and approval of treatments for Parkinson’s disease.

Developed by people with Parkinson’s, this document is based on the belief that individuals who are living with this disease bring a unique viewpoint to Parkinson’s clinical research. Clinical trial participants, who volunteer to assume great risk to help advance science through research, should be recognized as essential members of the research team.

.....

Read the entire document:
http://www.pdpipeline.org/advocacy/rights.htm

[vlhperry]

I had read it the first time you posted it. I posted a recommendation that genetic lines not be allowed for patent and the patient should be allowed to know if/ (some do not want to know) they have a mutation and what the chances are that they will pass it on to their children. The information may be just as important for the patient as it is for the science community in general. As for patenting a gene line, it will only slow down research by companies who may want to work with one or more gene lines and be forced to stop research for whatever disease because they can not afford the cost to pay for the right to use the gene lines.

Received a letter from my Congressman John Kline that the house hs passed a bill disallowing insurarence companies to discriminate on the basis of a person's genetic information. Wish they would pass a law putting the genetic lines discovered so far into a Federally maintained Data Storage and force the pharmaceutical industey to pay a small fee to use the data to pay for the data base management (as well as the National Debt.)

Vicky

[paula_w]

Vicky and all,

Have you seen this database about PD genes?

http://www.pdgene.org/

paula

[vlhperry]

I checked the database but it doesn't answer a question I've always wondered about. How does the deletion of 2 exxons, 3 and 5 affect a person? I have no idea what most of the proteins or anything else mean.

Vicky