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03/23/2012 - 1:41pm

What's the best way for a physician to talk with a patient? What are appropriate boundaries when it comes to patient care? How do palliative care and hospice work together? What's right - and wrong - about our approach to end-of-life care in the United States?

Commission Chair, Amy Gutmann (l) and Vice-Chair, James Wagner (r)In her opening remarks, (Transcript) Chair Amy Gutmann, Ph.D observed that the Commission has completed three reports in the last year and a half. “Turning now to the future…” she said, “…We're going to focus on issues related to genome sequencing and privacy and access to the data available, as the result of whole genome sequencing and its use in research and clinical care.”

Session 1 Ethics and the practice of whole genome sequencing in the clinic: Transcript

Retta Beery described her family’s personal success story, the result of whole genome sequencing done of her twin children, Noah and Alexis. They suffered for several years after birth from the many ill effects of a genetic metabolic disorder similar to, but misdiagnosed as Cerebral Palsy.  Finally, when the sequencing was done while they were in their early teens, a problem with serotonin uptake was discovered.  Administration of 5-HTP amino acid cleared up the symptoms and today the children are healthy. The story is detailed in Bloomberg News Online: Genome Proving Cure for Ailing Twins Paves Breakthrough to Doctor’s Office By John Lauerman - Jan 30, 2012 5:40 PM ET.

Richard Gibbs, Ph.D., Wofford Cain Professor, Department of Molecular and Human Genetics, Director, Human Genome Sequencing Center, Baylor College of Medicine, Houston, TX spoke on "Genome Data: Research to Clinic to Consumer"

He described recent advances in sequencing. For example, instead of doing whole genome sequencing the "next gen" rapid sequencing of isolated gene portions only, costs 1/5 the amount.

In his "armchair futurist's view of genomic and genetic data," Dr Gibbs stressed the importance of medical record and social/other factors is growing versus the population studies to which they are tied.

Responding to questions posed by commission members at the end of the session Gibbs said, "Tomorrow's challenge is community genetics education."  On 'snake oil' salesmen selling genetic sequencing for individuals he added, "Don't slow the pace of genomics... there's a tension here -- the danger of not knowing is as enormous as the risk of knowing."

On patenting he said, “As more specific genotype and phenotype information becomes available, we need to look at patenting that information -- we need to avoid a "land-grab" as a private company attempted to do in attempting to file for a wide patent during the race to sequence the human genome.”

Daniel Masys, M.D., Affiliate Professor, Biomedical and Health Informatics, University of Washington School of Medicine, Seattle, WA addressed the question of “Electronic Medical Records and Genomics: Possibilities, Realities, Ethical Issues to Consider”
He described an electronic medical records system set up at Vanderbilt to link doctors pharmacists and patients, to detail personal genetic data that suggests the efficacy or not of particular drugs in treating a patient's condition.

By taking genome-wide association studies a step further, and looking at phenotype-wide association studies, scientists are now able to look at associations of diseases within phenotypes -- for example, diabetes type II and asthma, or myocardial infarction and peripheral vascular disease -- as studied by sites in the eMERGE network (electronic Medical Records & Genomics) that link biorepositories to electronic medical records in doing genomic studies.He underlined the magnitude of the task of finding the molecular data:

  • Structural genomics, “the DNA in residence" studies about 22,000 genes per genome.
  • Functional genomics, looks at the 1-2% of genes switched on
  • Proteomics examines the 400,000 proteins coded for by the 22,000 genes

He suggested the caption of a New Yorker cartoon says it all: "The good news is we have the human genome, the bad news is, it's mostly just a parts list."

He stated the issues to consider:

  • Is it ethical to allow health care providers to continue to practice without a systems infrastructure for decision support?"
  • Is it ethical to discard person-specific DNA data that currently has uncertain or unknown significance?
  • How does 'genomic consent' differ from standard consent for healthcare services?"

Flash videos with slides are available here.

03/23/2012 - 8:36am
Alaska Senator Fred Dyson has an op-ed in the Alaska Dispatch defending his proposed SB 172.  He writes:  "In a recent meeting with the Providence Executive Leadership Team, I was told that the doctor always has the last word on a DNR order, regardless of patient consent. Providence maintained this was true even if the patient had full capacity to make all their own health care decisions and understood the risks and benefits of an attempt at CPR."  Dyson continues:  "The question is whether current law gives a patient, with capacity, the right to make a DNR order ineffective. I maintain it does, and SB 172 seeks to clarify the meaning of existing language in the law."
03/23/2012 - 7:15am
Recent developments in synthetic biology, and why some advocacy groups are calling for a moratorium on those developments.
03/23/2012 - 7:06am

Video clip from Icelandic show by Sailesh the Hypnotist

03/23/2012 - 3:00am

One of the most vexing questions for technoprogressives and transhumanists is how to maintain the hard-won gains toward political equality among citizens as we become more diverse in our bodies and abilities. Francis Fukuyama pointed to the challenge in Our Posthuman Future, and Nicholas Agar addressed the issue in Humanity’s End. Technoprogressives believe that an expanded transhuman solidarity is possible if enhancement is made widely and equitably available, and if we we fight for a society committed to the rights of all persons. But it won’t be easy. In this story David Brin reflects on political and even theological challenges of the advent of a society with radical enhancement.

The man behind the desk passed a stone paperweight from hand to hand....

03/23/2012 - 3:00am

One of the most vexing questions for technoprogressives and transhumanists is how to maintain the hard-won gains toward political equality among citizens as we become more diverse in our bodies and abilities. Francis Fukuyama pointed to the challenge in Our Posthuman Future, and Nicholas Agar addressed the issue in Humanity’s End. Technoprogressives believe that an expanded transhuman solidarity is possible if enhancement is made widely and equitably available, and if we we fight for a society committed to the rights of all persons. But it won’t be easy. In this story David Brin reflects on political and even theological challenges of the advent of a society with radical enhancement.

The man behind the desk passed a stone paperweight from hand to hand....

03/23/2012 - 2:35am

Should the “Doomsday Clock” be moved ahead because of threats from biotechnology?

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03/23/2012 - 2:01am

A scientific study has now confirmed what many women have known for ages, which is that certain types of exercise can induce orgasm. Indiana University health researchers Debby Herbernick and Dennis Fortenberry have just conducted a study of hundreds of women who report “exercise induced orgasms” (EIO), or “coregasms.”

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03/22/2012 - 7:02pm
Reports have been issued from the family, indicating that they believe Mike is safe and thanking IEET members for their help.