Newsday: Pregnancy as we Age

Smart, thoughtful bioethics scholar Susan Wolf contributes her own personal bit to this quick Newsday review of the year's stories about those women who are choosing to have children very late in life, and what their experience means for others:

"For a woman in her 50s or older, 'It can be hard to get down and up off the floor a million times a day or be sleep-deprived,' said Wolf, who became a first-time mother five years ago at age 45. With the number of older mothers growing, the American Society for Reproductive Medicine recently began a campaign to make women more aware of the health and social consequences of delaying motherhood."

A Sleepy Look to 2005

Religion & Ethics NewsWeekly isn't one of my favorite PBS efforts; all too often PBS eschews new bioethics programming because it is "covered already" by this budget discussion and debate program. R&E often has skimpier ethics reports than the major news networks, and that is truly saying something; its approach to bioethics has the feel of a star-struck church member. The program takes this look to what will happen in 2005 with an eye toward religion.

Asia Is Stem Cell Central

This piece elaborates on the role of some major Asian cities and nations in effectively beginning a drive to dominate stem cell research. Not much new here but it is comprehensive and there are some interesting examples of scientists who went east for the gold instead of west for the rush. [From Business Week]

Preservation in a Tsunami

BBC reports that there have been no recorded animal deaths due to the Tsunami:

Debbie Marter, who works on a wild tiger conservation programme on the Indonesian island of Sumatra, one of the worst-hit areas in Sunday's disaster, said she was not surprised to hear there were no dead animals. Wild animals in particular are extremely sensitive...They've got extremely good hearing and they will probably have heard this flood coming in the distance. Debbie Marter Conservationist "Wild animals in particular are extremely sensitive," she said. "They've got extremely good hearing and they will probably have heard this flood coming in the distance.

Gene Music

Nigel Helyer in Australia is making music out of DNA sequences, through a project "designed to establish a functional relationship between conventional Western musical scales and DNA sequences and produce a system for mixing and mutating musical form within a biological context." It's the method that is unique: "Rather than taking given DNA structures and rendering them as musical code, GeneMusik takes fragments of conventional Western melody and sequences them as DNA that is subsequently ‘bred’ and ‘mixed’ within bacterial cultures."

The Year in Review

At the suggestion of Mark Kuczewski, who comes up with lots of the most interesting "what we can do better" ideas in bioethics, we're thinking seriously about a "what happened in bioethics" review for the year. But what should we include? We would like very much to hear from you. The "what happened this year" newspaper pieces out so far are, well, unhelpful. Perhaps you can suggest reviews you would like us to attend to. Or better, tell us what you think about how we should format and publish it. We could run it in the Journal, or run it in InFocus on bioethics.net, where many more people would read it, or blog it one item at a time. We could blast it with the news update email, which has something like 80,000 readers. Or we could just not do it. But a lot happened this year, so much in fact that I can't think of a comparable year. You can leave your suggestions here as comments. Hurry up, ok?

Rapid Brain Expansion Propelled Human Intelligence

Chicago Trib reports on a Chicago study on human brain expansion and intelligence:

The first study of genes that build and operate the brain shows that humans underwent a unique period of rapi brain expansion that endowed them with a special form of intelligence not shared by any other animal, according to University of Chicago researchers.

The colossal leap forward grew the human brain to three or four times the size of that of a chimpanzee -- man's closest genetic relative -- when body sizes are equalized. That vast computing power pushed human intelligence over the threshold of basic instincts and into an unparalleled realm of cognition, self-awareness and consciousness.

Pharma Discusses How to be Ethical

Pharmaceutical Executive prints a transcript of the proceedings of a high-power discussion of how to be ethical in the pharmaceutical business. "The conversation was moderated by Joseph Cohen, a partner at the law firm. The participants were Raul Perea-Henze, MD, senior director/team leader, science and medical advocacy, for Pfizer; Roger Louis, chief compliance officer for Genzyme; Nicholas Capaldi, PhD, Legendre-Soule chair in business ethics at Loyola University New Orleans; Kevin Soden, MD, worldwide medical director for Texas Instruments and Celanese, and medical reporter for NBC and MSNBC; and Patrick Clinton, editor-in-chief of Pharm Exec." Trust me, you want to read this. But go get a good strong drink first, then re-open your laptop.

AIDS Fatigue: Celia Farber on "the AIDS Spin Machine"

From New York Press, a lengthy and thorough argument, right or wrong, from Celia Farber, with particular attention to Uganda and to Jonathan Fishbein:

After 20 years of hysteria, alarmism, misplaced recrimination and guilt, AIDS fatigue has beaten the newspaper-reading mind into a kind of blank. Citizens can't be faulted for not knowing how exactly to respond to last week's eruption of scandal from an NIH whistle-blower named Jonathan Fishbein, an AIDS researcher charged with overseeing clinical trials here and abroad. A reverberating language of bureaucracy and euphemism surrounds AIDS stories, making it impossible to know what has actually transpired. When people die from AIDS drugs, for instance, the word "death" is studiously avoided. I have seen medical articles documenting the fact that more people now die of toxicities from AIDS drugs than from the vanishingly opaque syndrome we once called AIDS. Death was referred to as a "grade four event," thus placing it eerily within the acceptable parameters of predictable phenomena in AIDS research—not as a failure, a crisis or even something to lament.

Indigenous Tribes at Risk of Extinction After Tsunami

The remote cluster of more than 550 islands, of which only about three dozen are inhabited, is home to six tribes of Mongoloid and African origin who have lived there for thousands of years. Many of these tribal people are semi-nomadic and subsist on hunting with spears, bows and arrows, and by fishing and gathering fruit and roots. They still cover themselves with tree bark or leaves.

"They are a vital link to our prehistoric past. If they are lost, India and the world lose a bit of their glorious heterogeneity," said Ajoy Bagchi, executive director of the People's Commission on Environment and Development, India, which has worked with tribal groups in the region for years.

"Even a small loss in any of these groups, barring the more numerous Nicobarese, could seriously endanger their survival. We need to immediately do a count on how many of them are alive."

[link; from BoingBoing]

All In The Family

A 55 year old woman gave birth to her three grandchildren, the Washington Post reports today. The woman had offered to be a surrogate for her grandchildren when her own daughter had tried unsuccessfully for several years to become pregnant through in vitro fertilization. Ethicists' opinions on the surrogacy arrangement were varied. For more info, read on: [link] -- Linda Glenn

Wesley Smith has Lots of Nerve

Wesley Smith has made a serious bid for the 2004 chutzpah award. in a new column he complains that proponents of embryonic stem cell research using cloned embryos are playing word games in how they describe cloned embryos. This coming in the context of a year's worth of conniving on the part of proponents of a ban on cloning for research to say they are not opposed to 'stem' cell research when what they mean is adult stem cell research and intentionally confusing reproductive cloning with cloning for research. Wesley--stones, glass houses, c'mon now! - Art Caplan

The Transplant Idea that Will not Die

Are pigs the future of transplants? Byron Spice of Pittsburgh Post-Gazette is impressed. - Art Caplan

Perfect People: the Grudge Match

Perfect people: is it a good aim? Art Caplan and Carl Elliott debate in Public Library of Science. It is fun to read but the argument is pretty much what you expect. Caplan discharges the debate as somewhat silly:

Beating up on the pursuit of perfection is silly. As Salvadore Dali famously pointed out, “Have no fear of perfection—you'll never reach it.” Critics of those who allegedly seek to perfect human beings know this. While often couching their critiques in language that assails the pursuit of perfection, what they really are attacking is the far more oft-expressed—albeit far less lofty—desire to improve or enhance a particular behavior or trait by the application of emerging biomedical knowledge in genetics, neuroscience, pharmacology, and physiology.

And Elliott responds that it isn't a conservative defense of human nature that motivates him, rather he is concerned about misplaced energies devoted to enhancement instead of more important aims; in particular Elliott is as always primarily fighting against big pharma's promotion of enhancement:

Caplan does not defend medical enhancement so much as attack its critics. Or rather, he attacks a small group of conservative critics who want to preserve “human nature.” He dispatches those critics with admirable precision, but I am not sure why he believes that group of critics includes me. My worry about enhancement technologies has little to do with human nature. My worry is that we will ignore important human needs at the expense of frivolous human desires; that dominant social norms will crowd out those of the minority; that the self-improvement agenda will be set not by individuals, but by powerful corporate interests; and that in the pursuit of betterment, we will actually make ourselves worse off.

Still, it is a fun read. And maybe it will get a few more copies of Better than Well and The Perfect Baby into circulation. Come to think of it, maybe we could stage a series of these wrestling matches ... yeah ... that's the ticket ...

Patenting Genes and Stem Cells

Danish Council of Ethics released this report on patenting of genes from humans and of hES cells.

All Sorts of NY Times Stuff: Autism, Clinical Trials, Tsunami

The NY Times reported this week that many with autism have essentially adopted the argument of those with Downs who make the claim that theirs is a different form of human life and experience, rather than a disability, syndrome or disease. Now they cover the absence of real evidence on what cures autism, if anything, and the meaning of that absence for patients and the health professions. Getting treatment for autism is increasingly difficult, because insurers do not want to pay, and the burden on siblings is more profound that has been realized. Each of these articles will be helpful for anyone dealing either with autism or with the more general issues in the ethics of just distribution of health care.

One piece on the Celebrex, Vioxx, Aleve problems and their implications for public perception of the FDA.

Are physicians boring? Like this needed an article.

NY Times covers medical relief efforts in the aftermath of the incredible tsunami devastation. This piece itemizes the hurdles that physicians and other health relief forces will face. Among the most significant distribution issues is one that involves the general inability of international and national groups in healthcare to work together or to do their own logistics:

The aim is to avoid much of the competition and lack of coordination that have hampered the response of governments and private organizations to earlier catastrophes, Robert Holden, a member of the command center team, said in a telephone interview. In responding to the tsunami in South and Southeast Asia, he said: "The biggest problem is ensuring that those who survived continue to survive and provide the materials they need. We must avoid creating a secondary disaster because we can't get the necessary materials through."

Denise Grady writes about the lives of five people enrolled in different clinical trials. This piece should be used by anyone teaching research ethics to clinicians.

Major Islamic Bioethics Program

UVA has trained Dr. Farhat Moazam, a pediatric surgeon, has completed training at University of Virginia in bioethics through UVA's incredibly influential religious studies-based doctoral program. Farhat returns to Pakistan to direct the Centre of Biomedical Ethics and Culture at the Sindh Institute of Urology and Transplantation in Karachi. The Center will be creating a new Masters program and will continue to work with faculty at UVA including Paul Lombardo and Jonathan Moreno, and will be sponsoring a major week-long Islamic Bioethics meeting in April. [thanks Jon Moreno]

Bread and Circuses

Physicians like to sleep in scientific meetings, but when and why? Kenneth Rockwood, David B. Hogan and Christopher J. Patterson for The Nodding at Presentations (NAP) Investigators publish a crucial piece in the online Canadian Medical Association Journal, entitled "Incidence of and risk factors for nodding off at scientific sessions," in which they:

conducted a surreptitious, prospective, cohort study to explore how often physicians nod off during scientific meetings and to examine risk factors for nodding off. After counting the number of heads falling forward during 2 days of lectures, we calculated the incidence density curves for nodding-off episodes per lecture (NOELs) and assessed risk factors using logistic regression analysis. In this article we report our eye-opening results and suggest ways speakers can try to avoid losing their audience.

Despite their known inefficiency, lectures ("a means of transferring notes from the pages of the speaker to the pages of the audience, without going through the mind of either") continue to predominate as a means of helping physicians learn their trade. At a recent 2-day lecture series, we noticed that many of the attendees around us were nodding off, including one of our coauthors (C.J.P.). After awakening him, we decided to study the boredom itself by measuring how often physicians nodded off during the lectures and assessing risk factors for this behaviour.

[thanks Paul Wolpe]

Transhumanism: Has Fukuyama Made it a Bad Word?

Bio•IT World describes the role of Presidential Bioethics Commission member and recent adventurer in bioethics Francis Fukuyama's pronouncement that human enhancement - in its aggregate, transhumanism - is awful, evil stuff. It has become clear that Fukuyama has done more to bring transhumanism into the public debate than any of its proponents, giving lots of space for public discussion of the ways in which human enhancement might make sense, and of ways in which that process can be understood and managed. No doubt this was not Fukuyama's plan, but the result has been great articles like this one, "More than Human."

Pfizer and Merck: Different Strokes

Business Week discusses the difference between the two drugmakers reactions to safety issues surrounding Celebrex and Vioxx.

The Enemy of My Enemy is ... My Enemy

Panos Zavos is on everyone's list of the top five, um, eccentrics in the human cloning race. He's fooled millions - twice - with promises that the first human clone's birth is imminent, and with preposterous claims about his own skills at cloning. He would be funny, if he weren't so dangerous. The emergence of Zavos has done more than anyone to convince the world that scientists who work with nuclear transfer are crazy. For example, today's British papers are all reporting that "cloning pioneer" Zavos is accusing Britain of "promoting infanticide." You'll love this:

[Zavos] branded UK rules governing reproduction as “super-conservative” and warned they were forcing many adults into having multiple abortions because it was illegal for them to choose the sex of their baby. He said British couples were visiting his clinic for “family balancing” treatments, having terminated a number of pregnancies because the gender of their unborn baby was not what they wanted. At the Kentucky Centre for Reproductive Medicine and IVF, where Zavos is associate director, treatments offered include pre-implantation genetic diagnosis, where the sex of embryos can be screened to ensure couples have a child of the desired sex.

You just know sex selection advocates want to stuff this guy into a small, dark closet ...

Neuroethics Profile

Martha Farah of Penn is profiled in Science Daily.

The Agony and the Ecstasy

Rick Weiss of the Washington Post reports today that the FDA has approved a proposal to test the illegal street drug "Ecstasy" for treatment of severe anxiety in terminally ill patients. Ecstasy, also known as MDMA or 3,4-methylenedioxymethamphetamine, is currently being tested for its ability to reduce symptoms of post-traumatic stress disorder. Psychiatrists refer to the drug as an "empathogen" helping to put people in touch with their emotions. Researchers at Harvard, who obtained permission from ethics review boards at Harvard and Lahey Clinic, to submit this proposal, believe that this drug could contribute significantly to the range of palliative care strategies available to patients who must face the emotional challenge of the end of their lives.[Link] - Linda Glenn.

Well, NIH Doesn't Pay a Lot

So P. Trey Sunderland III, leading NIH psychiatric researcher, earned $508,050 from Pfizer while working for NIH.

NIH Department of Transfusion Medicine Director Harvey G. Klein

This is the LA Times major story about what, if it is true, constitutes a significant conflict of interest for an NIH administrator, namely Harvey Klein:

Confidential income disclosure documents that the NIH recently surrendered to the House Energy and Commerce Committee and other records examined by the Los Angeles Times show that from 1999 to this year Klein received $240,200 in consulting fees and 76,000 stock options from five blood products companies. Klein acknowledged in written responses for this article that several other firms also had paid him fees; he said that he properly reported the compensation to the NIH.

While taking industry's money and also working for the government, Klein helped shape policies and practices that directly affected his industry clients and patients. He participated as an expert at dozens of federal meetings that focused on uses of new blood- related products but did not publicly acknowledge his role as a paid consultant to any company, records show. Other experts did so voluntarily.

Klein also wrote an article for a major medical journal whose editors now say they would not have published if they had known about his company ties.

Editorial ethics groups including the Council of Science Editors' and the World Association of Medical Editors (on both of which I serve) have just ramped up deliberations on this sort of conflicts of interest, but never did any of us imagine that the disclosure of information regarding conflict of interest within the NIH would reach this far or go this high. It seems likely an audit of publications by NIH scientists will be forthcoming. - GM

Living on, with Heartbreak

This is an incredibly touching part of a great series by the Baltimore Sun on the effect of the death of a child. The series is inspired by an Institute of Medicine report on the failure of the U.S. healthcare system to respond to issues in terminal illness and death of children more generally:

Too many sick children endure aggressive procedures and treatments. Too many won't get the pain medicine they need. Many go months and years, cycling in and out of hospitals, without emotional and other support, concluded the Institute of Medicine in its report "When Children Die." In calling for more research and better training, the institute urged organized medicine and others to look at what has been a hidden issue.

"It is a painful thing to sit and dwell upon, that there is undue suffering happening to and with our babies and children," said Lizabeth Sumner, a member of the IOM committee who pioneered hospice programs for children in San Diego. "There will always be kids who die of something. As a society, how are we going to choose to respond to that situation?"

Bioethics' New Media: Online Streaming Video

Just in - a perfect little distraction for a bit of non-work-like-bioethics-surfing during the holiday break. It is called 'Yahoo! Video', and according to MIT's Daily Recycler, which tracks the most cited links among all three million english language blogs, it is literally everywhere.

Why is it such a big deal? Because Yahoo! Video allows you to search from millions, yes MILLIONS, of video clips all over the internet in order to turn up clips in your area of interest. Beyond "ego searching" for clips in which you appear, the teaching and research uses for Yahoo! Video - and those engines that follow it - are expansive and interesting. Just think about all of the ways in which you might use a tool like this and you'll begin to see why, like Google Scholar, which in my opinion will revolutionize scholarly information, this is a major technological breakthrough for our field. For example, here is a search for video with stem cells in it. - GM

Wired News: Stem-Cell Method May Cheat Death

"Stem-Cell Method May Cheat Death" reports on the potential derivation of stem cells from a single cell removed from a morula, which we mentioned a week or two ago on this list. Note, though, that they think it will solve the problem of killing embryos, because the embryo it was removed from would persist. The philosophical conundrum is that, if you believe any totipotent cell is human life, when you remove that blastomere from the morula all you have really done is twinned the morula. To someone believing in the sanctity of embryonic life, it might not be enough that the parent morula is not destroyed. The blastomere itself can be considered life worthy of protection. There is a point at which the cells cease to be totipotent as the morula transforms into a blastocyst. If someone could culture stem cells from a blastomere taken from a morula/blastocyst that has ceased to be totipotent -- then we will have really solved the stem cell problem to everyone's satisfaction, I believe. I think the ultimate point is that the stem cell problem may go away soon, leaving us only with enhancement, abortion, and PVS to distract us from health care reform.

Think You Could Postpone Death to See a Relative? Think Again

From a JAMA embargo release:

Many of us think that the terminally ill can postpone their deaths so that they can see a relative, experience their last birthday or enjoy a special holiday - sadly, this is a myth, according to a new study. The study looked at the records of 300,000 cancer patients who died in Ohio, USA, between 1989-2000. The study found that they did not have the ability, or the desire, to wait till after Christmas, their birthdays or Thanksgiving before they died.

"For Christmas, Thanksgiving, or the individual's birthday, during the 12-year period there was no significant difference in the proportion of patients dying in the week after the event compared with the proportion dying in the week before the event," the researchers write. "Although overall birthday data showed no effect, women dying of cancer were more likely to die during the week before their birthday compared with the following week. Men showed no significant differences. In no subgroup was a statistically significant decrease of deaths observed in the week before the event."

"Although we cannot eliminate the possibility that a small number of dying cancer patients have the ability to control the timing of their death, the proportion would have to be much smaller than that previously reported," the authors write. " Š analysis of thousands of cancer deaths shows no pattern to support the concept that 'death takes a holiday.'"

-Dominic Sisti [from MCW]

Magnus Takes on Kitty Cloning

The Detroit Free Press reported that the first cloned-to-order pet, a kitten named Little Nicky, was delivered to a Texas woman about 2 weeks ago. The kitten, was cloned by a Sausolito company called Genetic Savings and Clone, for a mere $50,000. Little Nicky's owner had banked her deceased 17-year-old cat's DNA, which was used to create the clone. David Magnus was quoted: "It's morally problematic and a little reprehensible...For $50,000, she could have provided homes for a lot of strays." - Linda Glenn

But did the Celebrex Guys Train There?

The Yale Herald reports on the completion of the Pfizer building in New Haven, where it is setting up shop to do an incredible amount of clinical research. Bob Levine and Samuel Gorovitz are quoted. The relationship with Yale promises to be, um, interesting:

THE CONSTRUCTION SITE OVERLOOKS the Yale Medical School, a neighbor which Pfizer is glad to have. In fact, the Medical School proved a tipping point in Pfizer's decision to build its new unit in New Haven.

Dr. Robert Alpern, Dean of the Medical School, expressed enthusiasm over collaborations between the institutions. "We're extremely excited about the opening of the unit in New Haven," he said. "Pfizer has a lot of talent, skills, and resources that Yale doesn't have, and vice versa, so we think we're actually in a position to help each other a lot" ...

And also, well, there are lots of really poor people in New Haven with not much to do, which prompts all sorts of interesting criticism

When Pfizer announced its plans in 2003, the initial reaction from the people of New Haven was mixed. The New Haven Advocate featured an article on its front cover, headlined, "Guinea Pig City." Written by Paul Bass, the article accused Pfizer of exploiting the inner city population of New Haven by offering volunteers high prices to take experimental drugs. Bass proposes that Pfizer allow community input on its ethical review boards.

Levine is point-blank about the risks of this cozy relationship: "'What if Pfizer says we want certain sorts of research done here? Are the review committees at Yale going to be intimidated? These people have already given us a $35 million building plus the funding, so we better do what they want,' said Levine. 'Even to a university with Yale's endowment, that's a pretty attractive thing.'"

Dying to Get Rid of a Headache

In the latest spate of nonsteroidal anti-inflammatories linked to heart problems, the Washington Post reports that Aleve, which has been available over the counter for more than a decade, may increase people's risk of having a heart attack or stroke by as much as fifty percent. [link]

Meanwhile, last week, various news organizations and the National Cancer Institute reported that Celebrex could help prevent and even fight breast cancer. But, in the last few days, Celebrex has been implicated in increasing heart disease risks.Read more here and here. Obviously, more research needs to be conducted to balance the possible benefits against the possible risks.

Guest Blogger Linda Glenn

New to the bioethics.net blogosphere is Linda MacDonald Glenn. She's great and an old friend. Here's some info on her:

LINDA MACDONALD GLENN, JD, LLM (Biomedical Ethics, McGill) is a bioethicist, attorney, educator and consultant. Formerly a fellow with the Institute of Ethics with the American Medical Association, her research encompasses the legal, ethical, and social impact of emerging technologies and evolving notions of personhood. Prior to returning to an academic setting, she consulted and practiced as a trial attorney with an emphasis in patient advocacy, bioethical and biotechnology issues, end of life decision-making, reproductive rights, genetics, parental/biological "nature vs. nurture", and animal rights issues; she was the lead attorney in several "cutting edge" bioethics legal cases. She has advised governmental leaders and agencies, and published numerous articles in professional journals. She has taught at the University Of Vermont School Of Nursing, the Medical College of Wisconsin, the University of Illinois at Chicago Medical School and the University of Health Sciences Antigua, and has addressed public and professional groups internationally. Her extensive experience and passion for the issues facing the legal, nursing, and healthcare professions make her a compelling and thought-provoking lecturer. More about her background can be seen here.