Turn on the Bright Lights, Baby...

First, there were glowing cats.






Then, reports of glowing dogs.









Now, glowing marmosets;









The gene for express the green fluorescent protein in their skin was delivered to the first marmoset embryos via a modified virus, but the significant news here is that the genetically modified primates that can pass their modifications to their offspring; it is the first known case that an introduced gene has been successfully inherited by the next generation in primates. Why is that important? Because medical researchers have yearned for an animal model that is closer to the human anatomy; researchers may now be able to produce whole groups of marmosets that mimic humans with diseases like cystic fibrosis or Alzheimers'.

While this breakthrough is exciting, warning bells have sounded that this is one step closer to the creation of human designer babies. So, let me know pose this question: How comforting or discomforting would it be to see your baby glowing the dark?

A Critical Link: The Environment and Women's Health Conference

A Critical Link: The Environment and Women's Health Conference
In recent years there has been an increased awareness of the connections between environmental contaminants, fertility, and health -- and a growing body of evidence supporting these concerns that link reduced fertility to pregnancy loss, adverse birth outcomes, reproductive tract abnormalities, learning disabilities in children, and various cancers to environmental contaminants. It is becoming increasingly clear to those of us who work for women's health that we must begin to turn our attention to the environmental toxicants that are affecting the ability of couples to become pregnant, have healthy pregnancies, and give birth to healthy babies.

At Planned Parenthood of Northern New England, we feel a responsibility as a health care organization to help our patients and communities make the link between human health and the products we put in our bodies, and in our homes and schools.

On September 10, 2009, PPNNE is presenting A Critical Link: The Environment and Women’s Health, in Burlington, VT. This ground-breaking conference will feature a keynote address by ecologist, author, and cancer survivor Sandra Steingraber. Steingraber and other environmental health experts, will participate in a panel discussion moderated by Dave Rapaport, Seventh Generation’s senior director of corporate consciousness, and Mia Davis, national grassroots coordinator for the Campaign for Safe Cosmetics, Planned Parenthood Federation of America President Cecile Richards will kick off the conference and share the Planned Parenthood perspective on providing greener, healthier choices to patients. For more information go to http://www.good-chemistry.org/

A.I:. Salvation or Annihilation?

It's summertime and time for a new Terminator movie -- and Terminator Salvation asks the age-old question will Artificial Intelligence (the coming Superbrain, as the NY Times article dubs it) be our salvation or annihilation?:
"Today, artificial intelligence, once the preserve of science fiction writers and eccentric computer prodigies, is back in fashion and getting serious attention from NASA and from Silicon Valley companies like Google as well as a new round of start-ups that are designing everything from next-generation search engines to machines that listen or that are capable of walking around in the world. A.I.’s new respectability is turning the spotlight back on the question of where the technology might be heading and, more ominously, perhaps, whether computer intelligence will surpass our own, and how quickly."



Whether you are with Bill Joy on this or with Ray Kurzweil, A.I. is quickly coming to be part of our everyday lives. In a bizarre twist (hat tip to Jay Hughes on this) and juxtaposition of news articles, a recent article outlines how an A.I. System Suggests Arbitrariness of Death Penalty. Link to the abstract and article here.

Short People Got No Reason....(to gripe)

That's not how the song goes, but according to a recent NPR podcast, a recent neuroscience study shows that short people actually may experience things more quickly than tall people. Really, it's more an experiment about the subjective nature of time than about tall vs. short -- from the same neuroscientist who brought us the Possibilitarian movement, Dr. David Eagleman combines psychophysical, behavioral, and computational approaches to understand the neural mechanisms of time perception. For example, touch your nose and toe at the same time. (Humor me, will you?) ... Did you feel the touch at the same time? I did. But if you think about it, shouldn't the signal from the toe take a tiny bit longer longer to get to your brain? After all, your nose is on your face, which is closer to your brain. So shouldn't you have felt the touch on your nose first?

Eagleman calls this phenomenon "temporal binding": the brain manages to synchronize what's happening even though sensory data comes through your eyes, ears, tongue and skin at slightly different times and speeds. According to Eagleman, it may be that our sensory perception of the world has to wait for the slowest piece of information to arrive; "Given conduction times along limbs, this leads to the bizarre but testable suggestion that tall people may live further in the past than short people."

To listen to the entire podcast, click here, and to read more about subjective time versus neural time, click here. And to learn more about Eagleman's Lab for Perception and Action, click here.

Excellence in Inter-American Health Awards

The Pan American Health and Education Foundation (PAHEF) (www.pahef.org/awards/)is pleased to announce the extension of the deadline for the 2009 Call for Nominations of the Awards for Excellence in Inter-American Public Health Program to Monday, June 1, 2009, 5:00 p.m. Washington DC time.

The foundation is proud to administer this joint program with the Pan American Health Organization (PAHO). This program started in 1975 with the creation of the Abraham Horwitz Award for Leadership in Inter-American Health. Recipients of each award are recognized with a certificate of honor, a monetary award, and a paid trip to Washington DC.

Again, the deadline for submission of nominations for the five awards is now Monday, June, 1, 2009, 5:00 p.m. Washington DC time.

Abraham Horwitz Award for Leadership in Inter-American Health
Pedro N. Acha Award for Veterinary Public Health
Clarence Moore Award for Voluntary Service
Fred L. Soper Award for Excellence in Health Literature
Manuel Velasco-Suárez Award in Bioethics

Please be advised that the nomination process has changed. Now all award nominations must be submitted through an on-line application form.

We encourage you to forward this announcement to your friends and colleagues in Latin America and the Caribbean who may be eligible and share our interest in improving the health of the people of the Americas.

Lessons Learned from PrEP Trial Cancellations

Between August 2004 and February 2005, the HIV prevention world was rocked by the suspension and cancellation of two pre-exposure prophylaxis (PrEP) trials in Cambodia and Cameroon. To the considerable surprise of researchers, advocates and donors, these HIV prevention trials became embroiled in escalating controversies and sparked protests by activists speaking on behalf of the communities where trial participants were being recruited. The activists not only raised questions about how the research was being conducted, but also challenged the fundamental ethics and underlying motives of the research.

Just this week, my colleagues at the Global Campaign for Microbicides released two in-depth case studies relating the events that led to these trial cancellations and extracting the lessons they provide for current and future research:

• Research Rashomon: Lessons from the Cameroon Pre-exposure Prophylaxis Trial Site by Elizabeth McGrory, Andrea Irvin and Lori Heise
• Preventing Prevention Trial Failures: A Case Study and Lessons for Future Trials from the 2004 Tenofovir Trial in Cambodia by Anna Forbes and Sanushka Muldaliar

Acknowledging that no single version of the events constitutes the “real story”, the case studies are built from extensive interviews with researchers, policymakers and other government officials, donors, NGO staff, and advocates to reconstruct often incompatible accounts of what eventually led to government intervention that halted the research. The case studies capture the political context and backdrop against which the controversies arose and the underlying and unaddressed conflicts that led to the costly collapse of two Phase 3 trials.

These reports are important and exciting reading for anyone interested in sound science, human rights, gender equality and communication across enormous cultural, social, and economic disparities. The HIV prevention field has made substantial progress since 2005 in forging mechanisms to be transparent and build trust between trial communities and researchers. Still, much remains to be done and the potential for conflict remains.

As the first PrEP trials move toward completion this year, these case studies offer a timely look at what we have learned and what pressing challenges remain unaddressed.

The two case studies are available on-line at http://www.global-campaign.org/.


UPDATE: Dr. Free-Ride over at the blog Adventures in Ethics and Science is going to be hosting a virtual journal club on these two case-studies. Join in the fun here.

Are your genes your property?

In an earlier related post on biobanking, we asked our readers if they thought whether or not one's DNA should be private or publicly banked; the response was overwhelmingly in favor of privacy. Similarly, the notion of property rights in application to genes and genetic information presents serious challenges, as the Council for Responsible Genetics has long argued; their Genetic Bill of Rights includes a section that states "All people have the right to a world in which living organisms cannot be patented, including human beings, animals, plants, microorganisms and all their parts."

Now this issue is going before the courts: A group of patients, genetic researchers, and professional associations have filed a lawsuit against Myriad and the US Patent Office for patenting the genes known as BRCA1 and BRCA2. From the NY Times this morning:

"When Genae Girard received a diagnosis of breast cancer in 2006, she knew she would be facing medical challenges and high expenses. But she did not expect to run into patent problems.

Ms. Girard took a genetic test to see if her genes also put her at increased risk for ovarian cancer, which might require the removal of her ovaries. The test came back positive, so she wanted a second opinion from another test. But there can be no second opinion. A decision by the government more than 10 years ago allowed a single company, Myriad Genetics, to own the patent on two genes that are closely associated with increased risk for breast cancer and ovarian cancer, and on the testing that measures that risk.

On Tuesday, Ms. Girard, 39, who lives in the Austin, Tex., area, filed a lawsuit against Myriad and the Patent Office, challenging the decision to grant a patent on a gene to Myriad and companies like it. She was joined by four other cancer patients, by professional organizations of pathologists with more than 100,000 members and by several individual pathologists and genetic researchers.

The lawsuit, believed to be the first of its kind, was organized by the American Civil Liberties Union and filed in federal court in New York. It blends patent law, medical science, breast cancer activism and an unusual civil liberties argument in ways that could make it a landmark case. "

The complete article is accessible here; stay tuned as we follow this case, which could change the landscape in the field of genes and patents.

[Editor's note, added at 7:55pm, EDT: Colleague and WBP Supporter Art Caplan comments on this topic in his regular MSNBC column here, commenting that it is not always a bad thing when patent lawyers feel queasy. :>) ]

Swine Flu is not a Hoax

Here's a link to a piece I wrote that was in this weekend's Houston Chronicle. Although it is more from a public health perspective than a bioethics one, there's an aspect to disaster planning that I think should be of interest to us--which is the burden that falls to women because of the absolute lack of public health infra-structure. Who do you think has to take off of work when a school is closed or a family member is sick? How would any of us care for ourselves, our families, and our pets if we could not leave the house?
Although any infra-structure can be overwhelmed given a sufficient burden, we in the United States start in the postion: we have nothing to be overwhelmed.

The School of Athens and Bioethics

Raphael’s The School of Athens presents a scene familiar to anyone who has spent time in the world of bioethics, a swirl of heated discussion among passionate individuals from many backgrounds.  The painter draws his viewer’s eye to the very spot I occupy every day as director of a public policy think tank in Seattle: the intersection of reality, possibility, and belief. 

As biotechnology continues to outpace the imagination of all but the visionary, individuals face real life scenarios that were beyond our collective imagination a decade ago.  Whom I would add to Raphael's visualization of knowledge and great conversation today? Or, put another way, what knowledge do we now have that the earlier philosophers did not? How has that knowledge – scientific, aesthetic, political, psychological - changed how we understand what it means to be a moral human being?

I would add representatives from the fields of genetics, sociobiology, evolutionary psychology and neuroscience. Genetics helps us understand our origin in and connection to the natural world. Sociobiology takes that knowledge further and helps us understand the complex relationship between nature and nurture. Evolutionary psychology will help us understand the emotional and cognitive adaptations we make to technological gains. Advances in neuroscience are going to pose some of the most important ethical questions yet about what it means to be human — challenging our concepts of free will, gender and genetic determinism, and what sets us apart from other species.

I believe the most important conversations in this century will be between the scientists and the broader community as we struggle to understand the implications of new technologies. Let's make sure we are all in the picture.

Beans (A Poem for Organ Donation)

Beans

Because they fail to work properly on their own
A catheter was inserted into her abdomen
For easy access to the machine she uses daily
To help her kidneys balance the minerals that flow
In and out of her blood stream
The process is intricately connected to her food-intake
And the money she makes
The support she has from friends and fam
That worries about the fragility visible in her face
As she recants tales of fighting her landlord
Who doesn’t care about her handicap placard
Or the government that sits on the hill counting kidney transplants,
Comparing them to dollars and cents
As if they were beans in a jar
For years she’s struggled with doctors
Trying to make sense of the disease they cannot fully explain
- It causes swelling, bone loss, brain damage, and severe joint pain
She was taken off the transplant list, put back on… then taken off again
No one understands the agony she’s in
Not even I – her sister-friend
Although weak from frustration, mineral imbalance, and poverty
She writes letters to congress, speaks at rallies, and talks to anyone willing to listen
To God she prays for a kidney that works
As hard as she does to make life meaningful and whole
Like two kidney beans in concert
It is for KH that I write
In hopes that others will get to know the miracle of organ donation
And know that life…your life amounts to more than a hill of beans…

Posted by L7Holly

Women's Health Heroes Awards

The voting has started for Women's Health Hero over at the Our Bodies, Our Selves blog, and our very own Kathryn Hinsch has been nominated! Go Kathryn! Voting is only open until May 8, so get on over and vote!