Are You a Possibilitarian (or Possibilian)? Tales from the Afterlives...

Tired of the blather between Dawkins and the Discovery Institute? A refreshing and amusing voice in the debate on is-there-God-or-an-afterlife, is neuroscientist and author David Eagleman, who explains that science has taught him that 1) there are so many possibilities out there, 2) that there is a new movement, Possibilitians, who are not certain about anything, 3) the bigger point is that we really don’t know what is going on, and 4) Science teaches you not to commit yourself to anything if there is not enough evidence.

In his book, Sum: Forty Tales From the Afterlives, he imagines a variety of scenarios; here is an excerpt:

"In the afterlife you discover that God understands the complexities of life. She had originally submitted to peer pressure when She structured Her universe like all the other gods had, with a binary categorization of people into good and evil. But it didn’t take long for Her to realize that humans could be good in many ways and simultaneously corrupt and meanspirited in other ways. How was She to arbitrate who goes to Heaven and who to Hell? Might not it be possible, She considered, that a man could be an embezzler and still give to charitable causes? Might not a woman be an adulteress but bring pleasure and security to two men’s lives? Might not a child unwittingly divulge secrets that splinter a family? Dividing the population into two categories—good and bad—seemed like a more reasonable task when She was younger, but with experience these decisions became more difficult. She composed complex formulas to weigh hundreds of factors, and ran computer programs that rolled out long strips of paper with eternal decisions. But Her sensitivities revolted at this automation—and when the computer generated a decision She disagreed with, She took the opportunity to kick out the plug in rage. That afternoon She listened to the grievances of the dead from two warring nations. Both sides had suffered, both sides had legitimate grievances, both pled their cases earnestly. She covered Her ears and moaned in misery. She knew Her humans were multidimensional, and She could no longer live under the rigid architecture of Her youthful choices....
The most important aspect of Her new system is that everyone is treated equally. There is no longer fire for some and harp music for others. The afterlife is no longer defined by cots versus waterbeds, raw potatoes versus sushi, hot water versus champagne. Everyone is a brother to all, and for the first time an idea has been realized that never came to fruition on Earth: true equality. The Communists are baffled and irritated, because they have finally achieved their perfect society, but only by the help of a God in whom they don’t want to believe. The meritocrats are abashed that they’re stuck for eternity in an incentiveless system with a bunch of pinkos. The conservatives have no penniless to disparage; the liberals have no downtrodden to promote. So God sits on the edge of Her bed and weeps at night, because the only thing everyone can agree upon is that they’re all in Hell."

As this interview on NPR reveals, Eagleman's imagined afterlives range from the mundane to the profane. You might say that he's a member of the Church of What's Happening Now. Or a Singularitarian.
Either way, the possibilities are endless!~ And fun to consider...

To read more about Afterlives, click here.

Bioethics Joke

[Hat tip to Art Caplan for passing this one along!]

Have you heard about the new Denny's breakfast? In honor of the mother of the octuplets, Denny's is offering the 'Suleman': Fourteen eggs, no sausage, and the guy next to you gets to pay the bill.

Aging Research and Making the Future Vivid

Many thanks to Linda for inviting me to do a guest post on longevity science and aging for this blog. In this post I try to make the case for getting those interested in bioethics and issues pertaining to women to join the cause of supporting the basic science that could lead to a deceleration of human aging.

At first blush the proposition that those interested in the health and welfare of women should support aging research might sound counterintuitive. When we hear the phrase "aging research" we might automatically envision the kinds of products we currently see advertised on TV, like "anti-aging" creams that promise to restore the youthful appearance of skin, hide wrinkles, etc. Such products reinforce demeaning ideals of "womanhood"-- that a woman's self-worth can be reduced to her physical appearance and thus every woman should do everything she can to present herself as "youthful" and conceal the signs of aging. Those are not the interventions, and that is not the message, I am talking about. Far from it.

By "aging research" I mean the scientific field of biogerontology which studies the biological processes of aging. And by an "anti-aging" intervention (which is currently hypothetical... there is nothing you can currently buy that decelerates aging) I mean a pharmaceutical that decelerates the rate of molecular and cellular damage caused by aging. An intervention could do this be mimicking the effects of calorie restriction (without actually requiring a restriction of calories). A deceleration of the aging process would delay many of the common diseases and conditions associated with aging (like heart disease, cancer, stroke, AD, etc.) and possibly compress morbidity and mortality. Thus people would enjoy more years of disease-free life than that possible given the current rate of aging for most humans.

When I talk to people about my interests in this area there are a number of reservations and concerns they have. Let me briefly identify, and address, two of them: (1) many feel that talk of retarding human aging sounds like mere science fiction; and (2) many express the viewpoint that it is distasteful to worry about decelerating aging when there is so much poverty and disease in the world. I will very quickly address (1) and then focus on (2), with particular reference to the situation of women.

Talk of retarding human aging will strike many as either pure science fiction, or, at best, the prospect of an "anti-aging" pill is a long, long ways off. This is a common reaction and one that would have been more reasonable to hold 20 or even just 10 years ago. But over the past decade amazing progress has been made in the field of longevity science which makes the prospect of a genuine anti-aging pill becoming available in the next 5-10 years a real possibility. In fact there are a number of human clinical trials currently underway involving resveratrol (an anti-aging molecule present in red wine) and Sirtris has trials for more concentrated compounds.

So the first hurdle for these products is to establish if they are safe and effective treatments for the diseases of aging. If so, they could be pursued as a preventative intervention to protect people (including all future generations) from the diseases of aging. By decelerating the rate of aging during adulthood we could reduce our risk of disease and death in late life, thus extending the number of healthy years humans could expect to live.

OK, so back to my main goal of encouraging those interested in the issues facing women to champion this area of scientific research. This brings me to concern (2). One might wonder why, given all the pressing issues facing women in the world today, that they ought to add aging and longevity science to the list of things to address. "Is it really a priority?" one might ask. "Is it a priority in a world with disease and poverty?"

This is a fair question. And the answer is "YES!". Why? Because most disease in the world today is caused by aging. Now you won't find data from the World Health Organization that states that explicitly. But what you will find are the data concerning the proximate (rather that evolutionary) causes of morbidity and mortality. But behind the proximate causes of most human deaths (like cancer and heart disease) are the biological processes of aging. In other words, it is not a coincidence that most people who suffer disease and death today are over age 60. The vulnerabilities of late life reflect the tradeoff that natural selection has made between the fitness of a parent and reproduction. Natural selection favors a strategy in which organisms invest fewer resources in the maintenance of somatic cells and tissues that are necessary for indefinite survival of the individual (source).

The enormous and unprecedented disease burden the world will experience this century makes vivid the human toll of this tradeoff. Take the year 2005, the latest year that one can easily find the stats from the World Health Organization. Approximately 55 million people died in 2005. Of that number, 35 million died of chronic disease. That number is twice the number of deaths due to infectious diseases (including HIV/AIDS, tuberculosis and malaria), maternal and perinatal conditions, and nutritional deficiencies. That is a staggering figure. Furthermore, between the years 2005-2015 WHO estimates that 220 million people will die from chronic disease, most of them (144 million deaths) in lower middle income countries like China and India. The diseases associated with aging are not, contrary to popular perception, only a problem for people living in the developed world. Indeed, being vulnerable to disability and frailty is a much greater disadvantage if one lives in a poor society with no decent health care or pension, as the link between income and "ability to work" is much more direct. So the chronic diseases associated with aging are a problem for all societies, not only the richest countries in the world.

I don't want to fixate too much on the global figures for chronic disease but some brief comparisons with other events in human history will help us get a sense of the magnitude of the problem of chronic disease. It is estimated that between the mid-14th and mid-17th centuries, the "Black Death" plague killed approximately 25 million people. This means that the current deaths caused by chronic disease in just one year is equal to the number of total deaths caused by three centuries of the "Black Death" plague! The 220 million deaths caused today by a decade of chronic disease is closer to the scale of death from a few decades of small pox. In the twentieth century small pox is estimated to have killed between 300 and 500 million people. By 1980 small pox had been eradicated thanks to the small pox vaccine.

Could we vanquish chronic diseases like heart disease and cancer this century, like we did small pox last century? To make serious headway against chronic disease we must understand the ultimate (that is evolutionary) and not just proximate cause of disease. There is no virus that is responsible for all cancers, heart disease, stroke, AD, etc. But if we better understand the biological processes of aging we may be able to modify the rate of aging so that we reduce our risk of disease and death in later life. So tackling aging is an issue of preventative medicine. An anti-aging pill that slowed down the molecular and cellular damage of aging would extend the period of healthy life humans could expect to live.

In order to appreciate the great benefits this could confer upon women, especially women in poorer countries, consider the facts of this report:

Women comprise the majority of the older population in virtually all countries, largely because globally women live longer than men. By 2025, both the proportion and number of older women are expected to soar from 107 to 373 million in Asia, and from 13 to 46 million in Africa.

And.....Osteoporosis and associated fractures are a major cause of illness, disability and death, and are a huge medical expense. It is estimated that the annual number of hip fractures worldwide will rise from 1.7 million in 1990 to around 6.3 million by 2050. Women suffer 80% of hip fractures; their lifetime risk for osteoporotic fractures is at least 30%, and probably closer to 40%. In contrast, the risk is only 13% for men.

To fully appreciate the benefits of an intervention that decelerates human aging we must make the future health prospects for women in the world today more vivid. In particular we need to consider what the situation of those vulnerable today will be in the decades to come-- like the 373 million older women who will be living in Asia by 2025. These women will be vulnerable to the chronic diseases and disabilities of aging. But we could reduce these risks if we could decelerate human aging.

One of my favourite Ted Talks lectures is this one by Harvard psychologist Dan Gilbert. It is a brilliant presentation, outlining how our decisions are skewed by a variety of limitations and biases.

At the end there is an apt question from biogerontologist Aubrey De Grey concerning how these cognitive limitations impact our ability to see aging for the threat that it actually is. Gilbert responds by noting that humans can imagine the near future much more vividly than the far future. That is why we are more likely to address the problems of today rather than those of tomorrow. And this is a real problem for humanity given that the health problems facing 2 billion persons over age 60 by 2050 will be enormous.

To get people to make more sage decisions about the far future we need to provide them with details. We need to help them become psychologically connected with the future. The more detail people have about the far future the more likely they will make decisions about it like they do the near future (though we don't always do the latter well either, but that is the subject for another post! :)).

So my plea for getting those interested in women's health and welfare to get behind aging research is one that seeks to make vivid the threat that senescence poses to the health prospects of women this century. Senescence will likely cause more disease and disability for women this century than any other cause. Senescence not only threatens our health and survival by increasing the risk of fatal diseases (like heart disease and cancer), but also one's ability to contribute to their communities and families. Aging research is thus a vital component of developmental economics. The sooner we increase public support and funding for this science, the sooner we will be able to reduce the risk of morbidity and mortality for the world's aging female populations.

Cheers,
Colin

Making Multiple Births Fun and Profitable

[Hat tip to Art Caplan for bringing this story to our attention] With all the recent attention given to Nadya Suleman and her brood of 14, comparisons have been made to the popular show on TLC, Jon & Kate Plus 8, which chronicles the life of the Gosselins raising a set of twins and sextuplets. Philly magazine examines the way that the Gosselins have found a way to make the family business quite a profitable one -- and the article asks the uncomfortable question "when do your kids stop being your kids and start becoming your meal ticket?":

"TODAY THE TWINS are eight and the sextuplets four, but Jon and Kate actually look younger than when the show began, more camera-friendly and polished. They’ve had their teeth whitened; Jon’s been working out and got a (free) hair transplant. The Gosselins have turned up on Oprah and Good Morning America, and inside the pages of In Touch Weekly and People. The show is TLC’s most popular series.

As a result, the family now goes on more free trips, and is treated to swag and catered to at every outing. Phils skipper Charlie Manuel let Jon and some of the kids run the bases after a game last season (they had box seats, and got an autographed bat from Shane Victorino); a zoo tour included getting to privately feed the giraffes. “They get the publicity of the trip, we get the trip,” Kate explains in one of the “Viewer FAQ” episodes. The kids model the latest tyke couture from Gymboree. They frolic with Wii Music, Play Doh’s Fuzzy Pumper Barber and Beauty Shop and Little Tikes Jump ’n Slide Bouncer as Jon gushes about why these are such great playthings and the camera zooms in on the logos. Nielsen ranks the series eighth out of 149 cable shows for product placement."

For the rest of the article, click here.

h+ Magazine #2 – Is The Future Cancelled?

I am pleased to be in good company with this issue and am happy to have the opportunity to write for an emerging magazine. The magazine is an impressive work with attractive layout, design, and presentation. I do hope you enjoy :D And feel free to share the link

h+ Magazine #2 – Is The Future Cancelled?
http://hplusmagazine.com/digitaledition/2009-spring/
http://hplusmagazine.com/

Has the future been canceled?

Articles:
"Space Solar: Set the Controls for the Heart of the Sun " by Howard Bloom

"The Global Financial Crisis: A Hiccup on the Path to Superintelligent Financial Markets?" by Ben Goertzel

"Singularity 101 with Vernor Vinge"

"First Steps Toward Post Scarcity or Why It's the End of the World as We Know it and You Should Feel Fine" by Jason Stoddard.

h+ #2 takes on the mess in front of us and then catapults us further on and further out.

Human Enhancement & Nanotechnology Conference

Human Enhancement & Nanotechnology Conference

March 28-29, 2009

Western Michigan University, Fetzer Center, Room 2020
Kalamazoo, MI USA

The Human Enhancement & Nanotechnology Conference focuses on the ethical, social, and related issues that arise in the application of nanotechnology to human enhancement. While nanotechnology is not the only technology that can be applied to human enhancement, it is and will be a core one; without it many current and future enhancements would not be possible. These technological possibilities will derive from manysources, especially nanoelectronics and nanomaterials.

As an example of an ethical issue, bionic limbs (e.g., for greater strength or vision) and neural chips implanted into one's head (e.g., for on-demand access to the Internet and software applications) may give the individual significant advantages in many areas, from sports to jobs to academia. But these technologies may hold health risks-similar to steroid or Ritalin use for enhancement purposes, as distinct from
therapy-as well as raise ethical concerns related to fairness, access, and general societal disruption. Therefore, it is no surprise that, on both sides of the debate, the ethics of human enhancement is believed to be the single most important issue in science & society in this century.

Who?

The conference will offer presentations by leading researchers and
rising stars in the field:

The conference is organized by faculty at California Polytechnic State Univ., Dartmouth College, Univ. of Delaware, and Western Michigan University. It is supported by funding from Western Michigan Univ. as well as the US National Science Foundation, under NSF awards # 0620694 and 0621021, as well as Delaware NSF-EPSCoR grant # EPS-0447610.

Registration

The conference is free to attend and includes continental breakfasts, lunches, and a good supply of coffee and snacks (to enhance our minds and bodies), but seats are limited; so please register early by clicking on the link and filling out the form.

What We've Been Reading This Past Week

~ Stem-cell ‘tourists’ travel to where they have access to controversial stem-
cell therapies/ treatments.

~ Every baby born a decade from now will have its genetic code mapped at
birth predicts head of genomics company. Just because we can, does that
mean we should?

~ More docs tell pharma reps to keep out. Does this mean no more free post-
its?

~ Comprehensive reform bill that would have banned pharma gifts to docs voted
down in Colorado.

~ Experts say consumers should have more facts in drug ads so they can make informed decisions.

~ Glaxo to cut prices on drugs sold in poor countries. They will also invest
profits in building clinics in those countries.

~ The U.S. drug industry has shifted most of its clinical trials to overseas
sites raises serious ethical concerns.

~ U.S. court: No link between vaccines and autism.

~ Pfizer owes damages for bilking Wisconsin Medicaid.

~ EU governments have no right to conceal the location of field trials of genetically modified (GM) crops.

~ Men may be their own worst enemy when it comes to their health.

~ Women on the other hand …: Coffee drinking lowers women’s stroke risk. Ooooh, imagine a Starbucks ‘pharmacy’ on every corner …

~ BUT, too much soda can kill a girl’s kidneys.

~ Deadly bacteria defy drugs, alarming doctors. Is this an argument for or against anti-bacterial soap? You decide!

~ Llama’s have unique antibodies that one day might be used to treat immune system diseases in humans.

~ Scientists have unraveled the genetic code of the common cold. Spectacular!

~ Decoy molecules drive cancer cells to suicide.

~Altered virus effectively delivers new gene to replace faulty one that causes CF and completely rids the lung of disease. I wonder if these researchers have seen I Am Legend?

~ Researchers have discovered that the good bacteria found in dairy products might also be an effective vehicle for an oral vaccine that can provide immunity to anthrax exposure.

~ A new study indicates that a pneumonia vaccine can significantly cut the risk of heart disease.

~ Oh, Baby: A prenatal link to Alzheimer's?

~ Doctors have identified two genetic mutations that control the growth and
development of malignant gliomas; maybe good news for brain tumor patients.

~ Cotton candy as a substrate to re-grow vascular tissue.

~ Biotechnology's potential barely exploited.

~ Stimulus package includes funds for comparison of the effectiveness of
medical treatments.

~ President Obama to lift ban on embryonic stem cell research soon.

~ Scientists and doctors try to qualm public fears about vaccines and autism.

~ Scientists preparing to storm Capitol Hill on March 25 (a.k.a. the million
scientist march?). Registration ends Feb. 23.

~ No European stem cell patent for spinal cord repair.

~ Retired nurse invents cough, sneeze cover. Maybe she can convince the
airlines to make these standard issue …

~ FDA approves new and improved treatment for gout (the first in 40 ~years!).

~ But agency second guessing another …Savient gout drug faces approval delay.

~ FDA orders Bayer to correct earlier claims in Yaz birth control ad.

~ FDA deliberately backed off of "Good Laboratory Practice" requirements for
medical device makers.

~FDA wants one strain changed for next flu vaccine.

~ Orphaned baby chimpanzees cared for by humans in a loving, attentive manner have been found to be more cognitively advanced than some human infants. But, then, is this really that weird? They do share over 99% of our DNA.

~ Parody: FDA Approves Depressant Drug For The Annoyingly Cheerful.

[Thank you to Lisa von Biela, JD candidate, 2009, UMN, Editor of the BioBlurb, from which this content is partially taken and edited. BioBlurb is a weekly electronic publication of the American Bar Association's Committee on Biotechnology, Section of Science & Technology Law. Archived issues of the BioBlurb, as well as further information about the Committee on Biotechnology, are available here.]

Transbeman, the era of CyberConsciousness (or the Death of Death?)

This past week, I had the pleasure of attending a private screening of Transbeman, a techno-fable film produced by Martine Rothblatt, that explores ethical, legal, and social implications of techno-immortality. I've asked for a clip/teaser to post, so that our readers can get a flavor for the film, but I can tell you that it is thoughtful, provocative, and raises many questions that would be a lot of fun to discuss in law classes or bioethics classes.

In an interview with We magazine, we get a peek into Martine's motivation: trying to make the world a better place. The problem, she explains is not that we are not smart enough, but that we are not empathetic, or kind, or compassionate enough, and the film explores that issue, masterfully. (And in the interest of full disclosure, Martine and I share a common passion -- to expand traditional notions of personhood.) The film has many wonderful archetypal references to the concept of dying to be reborn, but I don't want to reveal more, until the movie is officially released -- the producers, Transformer Films, are still looking a distributor, but once they find one, I have feel we'll be seeing a lot more of Transbeman, both in popular culture and in the classrooms of higher education. And considering that ABC news is doing their own research and special on the continuing evolution of the human race, it is a timely topic.

Stay tuned for more as this film and others like it, are released -- I look forward to the discourse!
[Mia, the first transbeman, developed by Qualia Robotics, depicted in the film]

Here We Go Again...

[Hat tip to supporter Paul Root Wolpe and our colleagues at Bioedge for bringing our attention to this story]

As we blogged about before on several occasions, the debate over the personhood and the legal/moral status of embryos (as well as other entities) continues: Even though the 'personhood for embryos' amendment in Colorado was resoundingly defeated, North Dakota is next in line to attempt to create a law that would give full moral and legal status to embryos.

The Grand Fork Herald reports that [The] "measure approved by the North Dakota House gives a fertilized human egg the legal rights of a human being, a step that would essentially ban abortion in the state.

The bill is a direct challenge to Roe v. Wade, the U.S. Supreme Court decision that extended abortion rights nationwide, supporters of the legislation said.

Representatives voted 51-41 to approve the measure. It now moves to the North Dakota Senate for its review.

The two-paragraph bill declares that 'any organism with the genome of homo sapiens' is a person protected by rights granted by the North Dakota Constitution and state laws.

It says the Legislature may choose one of its members to help defend the new law if its constitutionality is challenged in court." Full article accessible here.

I don't know if there are any fertility clinics in North Dakota, but I don't believe there are any exceptions for IVF. Given that this is an attempt to ban abortion, I wonder what consideration, if any, has been given to victims of rape or incest or those families who are choosing PGD to avoid transmission of painful genetic disorders. Or those women whose health might be threatened by a pregnancy (e.g. women with certain forms of MS or Eisenmenger's Syndrome).
There are less coercive ways to discourage and reduce numbers of abortions; and different ways to approach the issue, like Aspen Bakers' Pro-Voice solution.

More on Designer Babies

Kathryn Hinsch, founder and director of the Women's Bioethics Project started a trend with her post, Why I Love Designer Babies -- lots of people are commenting on this and here is just a sampling of the range of views:

From Science Progress, who encourages this as a conversation starter,

to

the AJOB blog, who writes about the Perfect Baby,

to

William Saletan on Slate, who asks "Is the era of designer babies finally here"?

to

the Los Angeles Times, who says we should select for health, not eye color.

We need to continue the dialogue -- your tax deductible gift will help our voices be heard! Please consider a donation to the Women's Bioethics Project. Click here.

All You Need is Love

A quick and driveby post as a follow-up to some of our previous posts about our interconnectedness and as the Sioux proverb goes, "With all beings and all things we shall be as relatives", this headline from the Discover magazine blogs caught my attention:

All It Takes Is Love: Baby Chimps Given Extra TLC Score Higher Than Human Infants on IQ Tests

We kid you not: Orphaned baby chimpanzees cared for by humans in a loving, attentive manner have been found to be more cognitively advanced than some human infants.

Authors of a new study in Developmental Psychobiology compared nine-month-old human babies to nine-month-old chimps who had received daily “mom sessions.” For 20 hours a week, humans would play with 17 of the orphaned infant chimps, helping them to develop motor skills and to “meet new challenges with curiosity instead of distress.”

Is anybody really surprised? [Apologies to anyone stuck with the Beatles tune "All You Need is Love" in their head now.]

IVF may increase risk of genetic disorders

Assisted reproduction is in the headlines again: today's NYT reports on a study that indicates that babies conceived through IVF may have a slightly higher risk of serious health problems. Here's the abstract for the scientific paper, in case you want to read more.

So: in light of recent discussions about the Suleman case (specifically the question of whether there should be an enforceable maximum number of embroys that can be transferred into a woman's uterus), how much additional risk is too much? At what point ought the state step in?

Informed Consent...We Dun' Need No Stinkin' Informed Consent

Hundreds of African American men were murdered, children were fed poisoned Quaker Oats, and honorable soldiers were exposed to toxins. Were these the acts of multiple serial killers? I guess it all depends on how you look at it.

Studies involving human subjects/patients have been a topic of controversy for many years. Government reactions, such as The Declaration of Helsinki, are meant to put controversies to rest; however, recent accusations within an article published in the New York Times are yet another example of weaknesses in controlling human studies.

Apparently, in the late 1980s, the Boston's child-welfare agency developed a policy to allow foster children to enroll in drug trials at a time when there were no approved treatments for children infected with H.I.V. and AIDS. Sounds harmless right? They had acted in good faith and in the interests of the children. However, you must remember; it all depends on how you look at it.

Liam Scheff, a freelance journalist in Boston, charged that the children were put in trials without their parents’ knowledge and were given medications known to cause death. He said that the drugs in question had Food and Drug Administration warnings on them and that they had “caused permanent injury and painful death in adults who have taken the exact same drugs at normal prescribed doses".

As a result, in 2005 the city commissioned the Vera Institute of Justice, an independent nonprofit group, to investigate the claims.

The Vera Institute of Justice found no evidence that any children died as a result of the trials or that the foster children were selected because of their race. Sounds like Liam can put his money where his mouth is, right? We're not done yet.

On the flipside, it was also found that the child-welfare agency had not always followed its own protocols and kept poor records. Sixty-four children participated in 30 medication trials that were not reviewed by a special medical advisory panel.

Moreover, the informed consent forms from biological parents or guardians were missing from the child-welfare files in 21 percent of cases. In some cases handwritten consents were found instead of the official consent forms. No big deal, right?

Wrong! The problem with this case is the issue of enforcement. It's all well and good that we have guidelines and policies set in place, but if researchers do not follow these guidelines, then what use are they? Without informed consent, there is no way to know if the parents/legal guardians knew the details of the study or if they even agreed to the child's inclusion.

The unethical events within this story may not have the same magnitude and lasting effects as the Tuskegee Syphilis Study; however, isn't this story an ethical consideration that must be viewed with the amount of gravity?

I guess it's all depends on how you look at it…

Photojournalism and the public’s health: art or information?

My addiction to taking pictures started when my grandfather traded my cheap little camera for his better quality 35mm Kodak. Long before I considered myself a photographer, I just liked taking pictures. I’d annoy family and friends, intrude on mating animals, disrupt a dance, or make babies cry with curious clicking or a blinding flash. In the end, that shot of my 20-month old niece dumping milk over her baby brother’s head was worth my brother’s laughter and irritation.

I bring a camera everywhere I go. A few years ago I upgraded and bought a new one specifically for my move to Kinshasa, Democratic Republic of Congo. I wanted to document everything with photos. I shot my house and the flora and fauna surrounding it. My neighbors and colleagues obliged my interest in their culture by stopping and striking poses for their American friend.

The first time I encountered resistance was on the street - cruising down the main boulevard a group of police officers with rifles sat on either side of a bench hoisted on the back of a standard Toyota pick-up truck. It wasn’t just that the passengers of the truck intrigued me but how young the policeman looked. Unfortunately for my portfolio, there were laws about taking photos on the street. I couldn’t risk exposing my camera to the officers so I tried to conceal it. One of the officers spotted it and reprimanded me with a shake of the head and wagging his forefinger. I wasn’t bold enough to disobey the law in a foreign country – especially when the law blatantly displayed their rifles with a shoulder strap of bullets. The second time I whipped out my camera on an unsuspecting passerby I was met with fierce eyes and a hand gesture that only included his middle finger. After that, I learned a hard lesson about treating people as inanimate objects for foreign curiosity.

A fellow American colleague helped me put my intrigue into perspective. Just ask, he said; if not directly (since I didn’t initially speak the language), at least indirectly with gestures of the eyes not only visible through the camera’s looking glass. Permission – wow, what a novel concept? Unfortunately that wisdom fell on deaf ears when we attempted to empathize with the privacy of a young girl suffering from the debilitating physical symptoms of a deadly disease. At least, we tried to compromise, cover her eyes with a black bar for some measure of anonymity. The investigators and presenters did not see (no pun intended) the logic and that young girl unknowingly became the poster-child of a disease that may have taken her life.

As a scientist and artist I am torn between the constant quest for knowledge and the desire to display that knowledge photographically. However, exploitation is rampant around the world. Especially when politically, economically, and socially-disenfranchised people are involved. Out of respect for them, I have to put my intellectual power and artistic ability aside and respect their right to privacy and to consent. The fear, understandably, is loss of the creative moment or lost opportunities for information sharing. Yet, there is a much appreciated richness when the spirit of collaboration is invoked and no one moment or person is taken for granted.

the lawful frame of the banks of stem cells in France

The conservation of the stem cells is an essential question born with the increase of the samplings of stem cells of the umbilical cord especially but equally placenta. In France, specific and strict rules exist in case of samplings of organs or of fabrics. To be able to reflect on the nature and the lawful system of the banks of stem cells, it is necessary to ask himself the question of the nature of the stem cells themselves.

The stem cell is an integral part of the human body because it is unity. It is unavailable, as the human body in his entire one, and cannot do the object of a bill of sale or the object of a contract of property right. The possible lonely act is the donation of stem cells.

This statute has a direct consequence on the nature of the banks of stem cells. They must have a public character and cannot be considered as vulgar stores of stem cells

Seen the lawful current French texts, a last question must be put concerning the appearance of new forms of banks of conservation: the mixed bank as the Virgin Health Bank creates by Sir Richard Branson. Can such a bank be established in France? We reply by the negative one.



In French;

La conservation des cellules souches est une question essentielle née avec la multiplication des prélèvements de cellules souches du cordon ombilical surtout mais également du placenta.
En France, des règles spécifiques et strictes existent en cas de prélèvements d'organes ou de tissus. Pour pouvoir réfléchir sur la nature et le régime juridique des banques de cellules souches, il faut se poser la question de la nature des cellules souches elles-mêmes.

La cellule souche fait partie intégrante du corps humain car elle en est l'unité.
Elle est indisponible, comme le corps humain en son entier, et ne peut faire ni l'objet d'un acte de vente ni l'objet d'un contrat à caractère patrimonial.
L'acte unique possible est le don.

Ce statut a une conséquence directe sur la nature des banques de cellules souches.
Elles doivent avoir un caractère public et ne peuvent pas être considérées comme des vulgaires magasins de cellules souches.

Vu les textes juridiques français actuels, une dernière question doit être posée concernant l'apparition de nouvelles formes de banques de conservation: la banque mixte comme la Virgin Health Bank crée par Sir Richard Branson.
Une telle banque peut-elle être implantée en France? Nous répondons par la négative.


To read the article completely, click on the title. Good reading to all!

News of Note this past week

~ Gender disparities persist in treatment of stroke. Guess which direction this one cuts.

~ TANSTAAFL: Pfizer to disclose payments to doctors, researchers starting in 2010. All right, let’s hear it!

~ Second Stryker sales rep pleads guilty to misbranding a medical device. A

felony.

~ Ovaries can be safely saved in some endometrial cancers.

~ 9 flawed genes found in risk of heart attack. Ah, the plot thickens!

~ Are you what you eat?: Mediterranean diet could cut risk of dementia. Quick! Get me some fish and olive oil.

~ Bone drugs may help fight breast cancer. Nice added benefit.

~ Damaged spinal cords in mice improved by transplants of neural stem cells produced with human induced pluripotent stem cells. We can rebuild them .

~ Are fears over bioterrorism stifling scientific research?

~ Naturally occurring brain protein may slow or stop the progress of

Alzheimer’s.

~ Gene therapy offers hope of cure for HIV: bone marrow transplant breakthrough.

~ GM goats raised to produce human breast milk. Just had to include this

story, in light of the one right below!

~ FDA approves drug made in milk of genetically altered goats. This is the first time such a drug has been approved. They also looked back at 7 generations of the goats to look for adverse effects on the animals.

~ Epilepsy group asking lawmakers to prohibit pharmacies from switching prescribed meds to generics amid reports of increased seizure incidence with generics over brand name epilepsy meds. Hmmm . . .thought generics were supposed to be bioequivalent. Seems that is not always the case!

~ Wacky names for newly discovered fruit fly genes. Examples? “Cheap Date,” “I’m not Dead Yet” (otherwise known as INDY). Who said scientists have no sense of humor?

[Thank you to Lisa von Biela, JD candidate, 2009, UMN, Editor of the BioBlurb, from which this content is partially taken and edited. BioBlurb is a weekly electronic publication of the American Bar Association's Committee on Biotechnology, Section of Science & Technology Law. Archived issues of the BioBlurb, as well as further information about the Committee on Biotechnology, are available here.]