Hello PARKINSN list:

and Warren King Seattle Times medical writer:

It feels odd, responding to a newspaper article, but I do it all time...
I just haven't bothered to make it public.

Recently, there has been discussion on the list about what to do  with
some of the editorialized articles that are published in newspapers
and can influence government and public opinion.
So, this e-mail will be shared with the newspaper writer.

This is just my opinion, I haven't included my references to
technical information I've come across recently,
I would like to be better at that in the future.

The state of the art is changing quickly.
The future is now.
....................................................................

Murray Charters wrote:
>
> Friday, June 01, 2001 - 12:00 a.m. Pacific
> Human cloning called too unsafe to perform
> By Warren King
> Seattle Times medical writer
> Human cloning is so unsafe that it should never be conducted,

What if it becomes " safe "?    That time will come.

> and the scientific community should speak out clearly on the issue,
> the director of the federal Human Genome Project told a gathering
> of scientists in Seattle yesterday.
>
> "Regardless of how you feel about the morality of it," Dr. Francis Collins,

This introductory statement is leading, by introducing
the  ambiguity of discussions on morality, immediately
creating an ambivalent tone for the rest of this tentative discussion.

  " Morally ", I am not opposed to cloned individuals, as long as they are
treated with respect, just  like any other human,
with observation of their human rights.
We can utilize in vitro fertilization children as models.

 Perhaps, the issue is not about  " to clone, or not to clone ",
 but, about human rights.

> said, "the safety issues are huge. Animals that have been
> cloned are not normal - and that's not to mention all the stillborns."

 Eventually, this will not be a problem.

 What happens once it is safe?

 A recent abstract, that I have read, has indicated that
 methylation of DNA is abnormal in cloned animals.
 Methylation is part of the process for turning genes on and off.
 The DNA needs to be " reset ", from its adult configuration.
 Methylation has been investigated for years,
 and pieces of the puzzle will soon fall into place.

 My concern with some of these statements is the confusion generated
 about " cloned " individuals, and, " therapeutic " cloning.

 Therapeutic cloning, could be used to produce embryonic stem cells.
 Somatic cells, easily obtained from a person's body, could be
 used to  produce an embryo, that would be a source of stem cells
 and would be turned into tissue culture by 10 days, before differentiation.
 The methylation issue is relevent with this technique also.

 These pluripotent cells, could be used to treat a number of disorders,
 without fear of host versus graft rejection, when transplanted back
 into the donor, an ideal situation. This is a gene therapy technique,
 that is relevant to the treatment of Parkinsons disease.

 My concern, is that I really don't want Authority determining what I do
 with my own cells.

> here to address a meeting of the American Society of Gene
> Therapy, said scientists should take a firm stand on this and other
> ethical issues that are rising at an unprecedented pace with the
> rapid development of genomic technology.
>
 The cloning issue, is just the beginning, and he predicted a timetable
 for some of these future issues.
 He was  warning that issues need to be looked at now.

 Scientists created the nuclear bomb, and later considered issues of conscience.
 You have to give this person credit for addressing future concerns.

> "We ought to identify areas that we are not going [to get into]
> and say so publicly," the pioneering researcher told an opening
> session yesterday of the conference at the Washington State
> Convention and Trade Center. About 2,500 researchers are
> attending the meeting through Sunday.
>
This is probably a good idea, but,
how do you get a diverse community to agree on anything?

Authority?

> A Kentucky scientist and a religious group in New York state have
> said they will try to clone a human. Both disparaged assertions by
> the federal Food and Drug Administration (FDA) that it has
> regulatory control over such an effort.
>
      They question Authority already.

> In a wide-ranging address, Collins predicted that genes for most
> of the major illnesses will be identified within seven years. That
> includes heart disease, common cancers, diabetes, asthma,
> multiple sclerosis, Parkinson's disease, Alzheimer's and others.
>
The developments may push this forward. The Human Genome Project
was accomplished ahead of schedule, as technological advances in computing
speeded obtaining and disseminating results.

> But developing effective genetic therapies or drugs for the diseases
> will not be accomplished until roughly 2020, he said.
>
Protienomics will be dependent on computer modeling of protein shapes and
transformation. The definition of protein structure is the
next step in exploring the genome, and potentially very lucrative.

 New therapies will come out along the way,
 and we should not have to wait until 2020.

> Collins also predicted that by 2030, genomics-based health care
> will be widespread and the human life span will be an average
> of 90 years.
> Major anti-technology movements also will be raging by then,

We don't have to wait until then.

> Collins said, and ethical questions will be more difficult than ever.
>
> "There will be serious debate over the possibility of humans
> taking charge of their own evolution," he said.
>
Cool.  Is this good or bad?

> Collins, who is widely respected among scientists, also said it is
> still far too unsafe to conduct gene therapy on human germ-line
> cells, the cells from which eggs and sperm are derived, to prevent
> genetic diseases. He predicted the safety issues will be resolved
> and therapies will be under way within 20 years.

Some grotesque genetic abnormalities maybe tempting to eliminate
from the human geneome. But,  some of them may hold evolutionary
advantage and are preserved because they were useful for survival.
An example would be Sickle Cell Anemia providing an advantage for
survival of malaria.

> Gene therapy attempts to treat genetic disease by replacing a flawed
> or absent gene with a healthy one. Usually, the technique uses a
> virus to ferry DNA into the defective gene. Only one gene therapy -

There are new developments here also, very recent.
A laser technique can be used to treat cells in tissue culture (in vitro),
introducing genetic material without the use of virus vectors.
In vivo  techniques, of course, need to be perfectly safe.

> for two patients with a rare, severe immune-system disorder - has
> ever worked, and it was only partially successful.
>
Editorial comment?

> Collins said testing for genetic diseases will become widespread
> in the future, and Congress should act to ensure that people's
> privacy is protected.
>
> He said the human genome will be mapped in detail by spring 2003.
> Researchers from the federal Human Genome Project and a private
> company, Celera Genomics, announced a year ago they had
> completed the first draft of the map.
>
> Other scientists attending the meeting said federal regulators have
> stepped up efforts to protect patients in clinical trials, after the
> September 1999 death of an 18-year-old Tucson man in a
> University of Pennsylvania gene-therapy experiment to cure
> his liver disease. It is the only death directly attributed to gene
> therapy.

This is what I mean by in vivo techniques being safe.

> Jesse Gelsinger, who had been relatively healthy before the
> experiment, died four days after a virus was used to ferry corrected
> genetic material into his body.
>
> He was not told that monkeys had died in a similar experiment,
> that other patients had difficulties with the treatment and that
> one of the scientists stood to profit financially from the experiment
> through a biotechnology company he had founded.

This is about the " ethics and morality " of individual scientists.

To me, this is the most important issue.
Guidelines were available.
Individuals pushed the limit.

I saw the father of the young man on CNN addressing Congress.
It was incredibly touching.

Then the bureaucrats from NIH were interviewed.
Guidelines were available.
Forms and reports... required.

> Dr. Phil Noguchi, of the FDA, said in a news conference that
> regulators are trying to ensure that patients are more informed
> in advance of their treatment - especially when others have
> been harmed by the therapy.

They are very cautious nowadays about viral gene therapy.

> Hospital panels that preview and approve human experiments are
> being examined to make sure they are not overburdened with too
> many clinical trials. And he said trials are being more closely
> monitored to ensure that they report adverse events to federal
> regulators.
>
I'm sure the paperwork load has increased.
It is a way for Authority to say, " we protect the public ".

> "It's important to make sure human subjects are protected,"
> Noguchi said. "Clinical research is privilege, not a right of the
> investigator."
>
> Warren King can be reached at 206-464-2247 or
> [log in to unmask]
>
> http://seattletimes.nwsource.com/html/localnews/134301893_gene01m.html
>
> ********
>
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--

                                 Ray Strand
                             Prairie Sky Design
 -----------------(   on  the Edge of the Prairie Abyss  )---------------
                          when  the  sky  is  clear
                            the ground is visible

                          49/dx PD 2 yrs/40? onset

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