[A2k] Paris Accord: proposals for section on medical R&D
James Love
james.love@cptech.org
Sun Jun 4 03:20:21 2006
Dear Herv=E9
On Jun 3, 2006, at 5:59 AM, Herv=E9 Le Crosnier wrote:
> =09I beleive you need to add one crucial question to
> =09your list :
> =09- every trial involving humans must be publicly
> =09 inserted before the beginning of trial in a
> =09 public database.
I agree that this would be good.. and maybe also it would be useful
to expand the issues of clinical trials and the contributions of
patients to science, in some other areas too. Since the theme of the
Paris Accord is to bring creative communities and consumers closer
together, maybe something like this would be appropriate.
(x) Patients should freely share biological materials, and consider
participation in clinical trials to test new medicines, with the
expectation that new scientific advancements will be accessible to
all, that clinical trials and other experiments follow appropriate
ethical standards, and that the trials are reported to public
databases, in order to provide for greater transparency of the
scientific evidence, subject to appropriate protections of personal
privacy.
.....
I'm sure this can be improved... Jamie
> =09This is a proposition that come from many scientists.
>
> =09I'm not fluent enough neither with english, nor with
> =09the specific problem, but here are some articles that
> =09pinpoint this problem.
>
> Herv=E9 Le Crosnier
>
> ----------------------------------------------------------
> http://www.nytimes.com/2006/04/08/world/europe/08britain.html
> British Rethinking Rules After Ill-Fated Drug Trial
> (Le probl=E8me des essais th=E9rapeutiques dans le cadre d'une "course =
=E0
> l'innovation scientifique") Date : 08 avril 2006 - In : New York Times
>
> ----------------------------------------------------------
> http://www.controlled-trials.com/isrctn/why_register.asp
> Why register trials? Why apply for an ISRCTN?
> (Organiser la collecte et la publicit=E9 des essais th=E9rapeutiques. Une
> tentative par BioMedCentral) Date : 14 septembre 2004
>
> ----------------------------------------------------------
> http://www.washingtonpost.com/wp-dyn/articles/A35253-2004Jul7.html
> WHO Wants to Start Drug Trial Registry
> (L'OMS demadera en novembre la cr=E9ation d'un registre de tous les
> essais
> th=E9rapeutiques, ce qui permettra au public de conna=EEtre aussi les
> essais
> conduisant =E0 l'=E9chec.) Date : 08 juillet 2004 - In : The Washington
> Post
>
>
> James Love a =E9crit :
>> This is pretty rough and incomplete... and criticisms, additions and
>> other suggestions are quite welcome. Jamie
>>
>> -------
>> On June 19-20, TACD is holding a meeting in Paris, on "New
>> relationships between creative communities and consumers." (http://
>> www.tacd.org/docs/?id=3D296) One objective of the meeting is to
>> negotiate the "Paris Accord," an agreement between creative
>> communities and consumers. Pre-meeting discussions about the text
>> are being held on the A2K discussion list.
>>
>> (http://lists.essential.org/mailman/listinfo/a2k, http://
>> lists.essential.org/pipermail/a2k/)
>>
>> Below is proposed text for the section of the Paris Accord on medical
>> R&D.
>>
>> Proposals for the section in the Paris Accord on Medical research and
>> development
>>
>> 1. Research and development is a necessary and valued component of
>> the health care system.
>>
>> 2. A number of different institutions are essential for the support
>> of medical R&D, including government, intergovernmental, non-
>> government not-for-profit and for-profit organizations.
>>
>> 3. The systems for supporting research and development of new drugs
>> should ensure sustainable sources of finance that support employment
>> in R&D organizations, but also should not undermine the goal of
>> access for all for new medical inventions.
>>
>> 4. Systems for stimulating R&D should address areas of greatest
>> health need and public interest.
>>
>> 5. The elements of the current systems of stimulating R&D through
>> high prices for medical products should be replaced with systems that
>> reward developers of new products directly for improved health care
>> outcomes. There is also a need to expand methods of funding
>> projects that support open research, and the development of databases
>> and other research tools, as well as high-risk R&D projects that are
>> likely to be useful for follow-on innovation.
>>
>> 6. Science depends upon access to knowledge. Hoarding of data and
>> materials must be discouraged. Intellectual property rules should
>> not prevent experimental use of inventions or materials, nor should
>> they discourage or prevent investments in any field of invention.
>>
>> 7. National governments should eliminate visa restrictions that
>> limit the ability of students to study at universities in another
>> nation, or restrict the ability of scientists or engineers to
>> participate in conferences or gain experience at firms in another
>> nation.
>>
>> 8. Methods of protecting investments in clinical trials for new
>> medicines should not prevent governments from making medicines
>> available at affordable prices or require unethical or unnecessary
>> replication of human experiments.
>>
>> 9. Individuals and communities that collaborate in scientific
>> research should receive appropriate recognition for contributions to
>> new scientific discoveries.
>>
>> 10. Governments must support global agreements to share in the costs
>> of evaluating new medicines. Such testing should be transparent,
>> and funded by sources that do not have incentives to distort or
>> misrepresent findings, and which address the most useful scientific
>> and medical questions.
>>
>>
>>
>> ---------------------------------
>> James Love, CPTech / www.cptech.org / mailto:james.love@cptech.org /
>> tel. +1.202.332.2670 / mobile +1.202.361.3040
>>
>> "If everyone thinks the same: No one thinks." Bill Walton
>>
>>
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---------------------------------
James Love, CPTech / www.cptech.org / mailto:james.love@cptech.org /
tel. +1.202.332.2670 / mobile +1.202.361.3040
"If everyone thinks the same: No one thinks." Bill Walton