Who benefits from prenatal testing for adult-onset disease?

I recently stumbled across this article (free, but registration required) by SUNY Albany's Bonnie Steinbock. The paper examines the growing practice of prenatal testing and considers who benefits from such testing for adult-onset conditions (such as breast cancer, schizophrenia, and Huntington's disease).

Steinbock outlines the purposes of prenatal testing in general: (1) prospective parents who are willing to consider abortion may wish to make an informed decision about continuing a pregnancy; (2) prospective parents, including those who would not terminate, may wish to have information available to help them prepare for the birth of a baby with health problems or special needs; (3) society may reduce the prevalence of genetic diseases; or (4) prospective parents may seek testing "for the good of the child."

As Steinbock points out, the predictive value of tests differs (meaning that some tests provide definitive information about whether a person will develop a given condition, as in the case of Huntington's, while others offer much less certainty). Some conditions are preventable or treatable, and others are not (this is the clinical utility piece I've blogged about recently). And even for conditions that are not treatable today, prospective parents might still hold out hope for a future treatment.

Botom line: Steinbock doesn't buy the argument that prenatal genetic testing for untreatable adult-onset diseases can be justified on the grounds that it is for the good of the child. She rejects the wrongful life concept in this context, noting that "in almost cases the child, once born, will have a life worth living. This is so even in the case of severe disability at birth, and much more so in the case of adult-onset disorders." This isn't to say that Steinbock opposes selective abortion--she defends it elsewhere--but justifications other than the benefit of the child must be marshaled to support it.

The Last Lecture

Those of you who know me, know that it was end of life issues that brought me originally into the field of bioethics. Dealing with death and dying is not something I did willingly. So when a friend sent me this link to The Last Lecture, I wasn't sure if I wanted to watch it. But this man, Randy Pausch, deals with his mortality in a such beautiful, positive way and helps give meaning to all of our lives, I felt compelled to share it with our readers:





The 10 minute reprise on Oprah can be found at this link, where Randy reminds us of the importance of such things as keeping your sense of fun and wonder, working and playing well with others, and showing gratitude.

I am reminded of Don Juan’s counsel in one of Carlos Castaneda’s books: that death is our constant companion, that it travels on our left shoulder, and that our task must be to make it our 'ally.' I would say that Randy Pausch has done an admirable job of doing just that.

Arts and Bioethics: Challenging Ideas and Cultures

The Arts Bioethics Network will be launched at the 9th World Congress of Bioethics in Croatia in a 2-hour session of performances in which artists from various genres will present work that has a bioethics &/or human rights theme.

The performances may include any of the following: dance, dramatic performance, poetry recitations, short films, music, & readings from fiction. The presentations will be followed by a brief statement by some of the presenters on their intentions & the power of their chosen medium in presenting the issue(s) inherent in their work.
You are invited to send an expression of interest in offering a performance.

Works of art: such as paintings, photos, posters and installations, are also sought for display in Congress venues throughout the Congress. The artists will be invited to discuss their work during the Congress at specified times.

Please send, by 31st March 2008, expressions of interest in offering a performance piece or presenting a work of art, with a brief description (1 page max) of your work & any supporting
material* (e.g. photos &/or videos) as Email attachment, to Arts Bioethics Network Coordinators: c.kuppuswamy@sheffield.ac.uk and pmacneill@med.usyd.edu.au

The statement should describe the work and its relation to human rights and/or bioethics, your intentions, and the power of your chosen medium in presenting the issue(s) inherent in your work. For performance: specify duration of performance (max. 10 mins). For work of art: any requirements for presenting.

Please include: Name of Presenter(s) or Artist(s); Contact Person; Institutional Affiliation; Contact E-mail; Contact phone number(s). *Supporting material not to exceed 8 MB. The Co-ordinators of the Arts Bioethics Network have established a process for identifying a representative selection of the performance pieces and works of art from those that are offered. The criteria for selection include: works that have a bioethics and/or human rights theme; and works that express the challenge of ethics and human rights in an increasingly cross-cultural world. You will be advised, by 30th April 2008, if you work has been selected.

For more information, please go to http://www.bioethicsworldcongress.com.

KaiserEDU essay contest

Attention students! KaiserEDU.org, a project of the Kaiser Family Foundation, has announced an essay contest for college undergraduates and graduate-level students. The prize is $1,000, the deadline is March 17, and the topic is healthcare reform. Learn more here.

Nature: eliminating gender bias in the peer review system simply isn't our priority

A scathing article in Scientific American and very dismaying news about how Nature editors rejected a peer review process that would reduce gender bias:

"Following a surprisingly unscientific line of reasoning, the editors at the most renowned and prestigious of science journals have rationalized away the need to fix an ailing peer-review system.

Increasing skepticism about the effectiveness and integrity of single-blind peer review—the process by which most academic papers submitted for publication are accepted or rejected—has prompted empirical evaluation of the system.

Standard practice is: reviewers—selected for their expertise and fluency in the chosen discipline—are aware of all authors’ names and affiliations, while authors are kept in the dark about the identity of their reviewers (although some journals allow them to request specific referees).

The growing argument against this lopsided method is that knowledge of authors’ identity—gender, nationality, research institution, level of experience in the field—can (and does) bias reviewers’ opinions on the merit of the research.

The most vocal critics of the current system are those who believe their submissions do not get fair consideration—women, early-career scientists, people with foreign-sounding names—when matched up against authors who sail through the submission process on the status of their lab or the history of their career. And in an environment in which research funding, hiring, tenure, salary, and academic reputation are massively dependent on publishing record, one can easily imagine the ripple effects such a disadvantage would bring."

Full commentary in SciAm can be accessed here. Nature has posted the editorial on their blog page, opening it up to the public for commentary, so let them know what you think.

Personally, I think the first commenter on the Sciam Blog got it right on the money: "Effectively, they're saying: "eliminating gender (or other) bias in the peer review system simply isn't our priority."

Bioethics and "The Island"

Like most of America, you probably haven't seen Michael Bay's The Island (2005), starting Ewan McGregor and Scarlett Johansson. It's not a cinematographic masterpiece. It is downright goofy in spots, there is a lot of stuff blowing up (this is the team that brought us Transformers and Armageddon, after all), and it has the most intrusive product placement I've ever seen in a movie. But if you're interested in bioethics, and particularly if you're interested in how the mass media depicts biotech, you should get your hands on the DVD. If you teach bioethics, the film could provide a nice springboard for discussion. Plus, for the first third or so, it's got Steve Buscemi, which is always a plus in my book.



The film is set in the not-too-far-distant future, in a prisonlike facility that (we are told) is one of only two safe places left on the planet following The Contamination. It's a highly regulated environment, in which individuals' sleep, diet, and bodily functions are monitored 24x7. "Proximity rules"--men and women aren't allowed to get too close--and other regulations are enforced by omnipresent security guards. The other safe place on the planet is The Island--a beautiful tropical paradise that has somehow escaped contagion. It is the dream of everyone in the place to go there. The only way to get a ticket is to win the lottery.

Our hero, Lincoln Six-Echo, is a nonconformist in an environment that requires absolute compliance. He breaks out of the facility, briefly, only to discover the truth: he and his compatriots are being used as biological raw materials -- "insurance policies" -- for the rich and famous in the outside (uncontaminated!) world. The supposed lottery "winners" aren't really winners after all. You can imagine, probably, how the action bits of the story unfold from this point.

There are lots and lots of interesting themes at work here, among them:

• The use of a public-health threat to control a population
• The creation of clones to serve as a source of transplant organs
• The creation of clones to serve as gestational carriers
• What makes clones different from humans (if anything), and what makes humans "persons" (in the philosophical sense of "one of us")--there is a great scene in which Steve Buscemi tries to explain to McGregor and Johansson that they're not like him
• The role of medical personnel in this operation--should physicians and nurses participate in this kind of thing?
  
• How language frames our ability to discern right from wrong (to their creators and their customers, the clones are "insurance policies," "products," or "Agnates"--not clones, not individuals, and certainly not people)
  
• How visual images shape our ethical intuitions--some very graphic depictions of how the clones develop and are "extracted," how they are treated by medical professionals and guards
  
• What it might mean that this film was released in 2005, as the stem-cell debate was heating up in the US
• Clones as human chattel, and connections with slavery (or sex trafficking, though the latter is not part of the film)
  

It might also be interesting to consider similarities to (and differences from) other media depictions of cloning and organ-harvesting. Oryx & Crake, Never Let Me Go, and Coma (also a 1978 movie) come to mind, but there are lots more out there.

Too many twins? Says who?

Today's NYT ran a piece that describes calls to reduce the number of multiple births resulting from in vitro fertilization efforts. Since the introduction of IVF in 1980, multiple births in the United States have increased by a whopping 70 percent--in no small part due to the fact that many prospective parents choose to implant multiple embryos in the hopes of increasing the odds of a successful pregnancy and birth. Several of us have blogged on other issues re multiples before, too... here, here, here, and here.

The article quotes a few experts who basically say that as the technology has improved, the need to implant "extra" embryos has diminished; but this raises the question of just what a successful IVF result looks like. Is one baby? More than one baby? All the babies the woman wants? And what about the health status of the infant(s)? If carrying multiple fetuses increases the health risk to mom and babies, but the woman wants to "maximize her investment" in the painful and expensive IVF cycle by shooting for triplets, can/should physicians try to dissuade her? On what basis?

It will be interesting to see how this plays out, particularly since fertility medicine is largely a consumer-driven affair. Infertility treatment generally isn't considered medically necessary by insurers and therefore isn't a covered benefit. People who pursue it are paying thousands of dollars--per cycle--out of pocket. Given all that, I wonder whether "the customer is always right" will be the governing rule.

Top Ten Technologies to Watch For in 2008

Technology Review has come out with their annual list of the top 10 most exciting, cutting -edge technologies and I can't wait to hear what our colleagues have to say about the ethical, legal, and societal implications (especially my personal favorites, 7, 4, and 3):

10.) Peering into Video's Future Is the Internet about to drown in digital video?

9.) Nanocharging Solar

8.) Invisible Revolution Artificially structured metamaterials could transform telecommunications, data storage, and even solar energy

7.) Personalized Medical Monitors

6.) Single-Cell Analysis

5.) A New Focus for Light - light-focusing optical antennas that could lead to DVDs that hold hundreds of movies.

4.) Neuron Control – a genetically engineered "light switch," which lets scientists turn selected parts of the brain on and off, may help improve treatments for depression and other disorders.

3.) Nanohealing -Tiny fibers will save lives by stopping bleeding and aiding recovery from brain injury, says Rutledge Ellis-Behnke.

2.) Digital Imaging, Reimagined - compressive sensing could help devices such as cameras and medical scanners capture images more efficiently.

1.) Augmented Reality

Which ones are your favorites? Which ones do you have the most hope for?

Science: money = influence

According to the NYT, a memo critical of the role of the Gates Foundation's increasing role in global health research and policy was recently released to the media. The World Health Organization's chief of malaria research, Dr. Arata Kochi, is worried that the Gates Foundation's business-minded focus on best practices and leveraged investment is at odds with the way scientific research should be done and the way international health policy should be developed.

WHO was quick to say that Dr. Kochi's views are not those of WHO as a whole. Good thing, too: whatever one might think of Microsoft and its business practices, the Gates Foundation has done incalculable good in addressing health problems that afflict a large proportion of the world's poor. Many of these conditions--such as infectious diarrhea and parasitic disease--are unattractive drug targets for corporations. If the Foundation has made these conditions higher priorities in the research community, I think that's got to be a good thing...and if they've also managed to bring some business discipline to decision making, emphasizing outcomes and return (in health trems) on investment, so much the better. And there's no reason, at least in principle, that you can't make concrete, if incremental, improvements in health today at the same time as other research efforts focus on more long-term, systematic improvement of the public health infrastructure. Both are needed.

Kochi's criticism does raise an interesting point, though, about the way science works. His assertion that centralized funding puts too much power in the hands of the Gates Foundation could just as easily be said about the Federal government--which funds an awful lot of research in the United States. But the bottom line is, the science that gets funded is the science that gets done, and 'twas ever thus. So ... what's on tap for 2009?

Federal funding of research and development for the 2009 fiscal year will be directed much more heavily toward the physical sciences and Homeland Security, and away from the life sciences. The NIH budget award will be the same as for this year--ie, it won't keep up with inflation, which amounts to a net reduction of funds. You can learn more from Science here, or from ScienceProgress here.

(Still) Wanted: A Female-Controlled Method to Prevent HIV

Twenty-seven years after AIDS was first diagnosed among gay men in California and New York, HIV/AIDS has become a health threat borne disproportionately by women in the developing world. Globally, there are twelve HIV-positive women for every ten HIV-positive men. In the hardest hit countries in sub-Saharan Africa, young women are three times more likely than their male peers to become infected.

The disproportionate impact of HIV on women is due to a variety of biological and socioeconomic factors. Many of those factors make today’s HIV prevention options – condoms, mutual monogamy, and male circumcision – inaccessible to women at greatest risk of infection. Many women do not have the social or economic power necessary to insist on condom use and fidelity or to abandon partnerships that put them at risk, and a recent study from Uganda shows that circumcision does not protect female receptive sex partners. There thus is a desperate need to develop new tools to enable women to protect themselves, including microbicides.

This morning, the Population Council posted the results of a phase III effectiveness study of a candidate microbicide called Carraguard, an odorless, clear gel made from carrageenan. Over 6,000 women in South Africa volunteered to be part of this clinical trial, in which participants were randomly assigned to either receive Carraguard or a comparator gel. Trial participants were instructed to use the gel plus condoms every time they had sex, and asked to return to the study clinic repeatedly over a two-year period. During this time, they were provided with condoms and received comprehensive risk reduction counseling, HIV testing, and screening and treatment for STIs.

Unfortunately, trial results showed that the product was safe and acceptable to women, but did not reduce their risk of acquiring HIV.

Twelve other candidate microbicides are currently in human trials, and a new generation of antiretroviral-based products is entering the development pipeline. But developing and testing these compounds is a time- and resource-intensive process, and many policymakers have begun to question whether or not limited public health resources are better used to promote proven prevention technologies like condoms.

This, I believe, is short sighted. For the reasons mentioned above, proven HIV prevention technologies will not protect at-risk women. Furthermore, drug development is always a long term struggle, with dozens of failed products for every one that makes it to market.

As disappointing as these results are, the fact that the trial reached completion is itself a breakthrough. Successful completion of the Carraguard trial is a testament not only to the commitment of the study investigators but also to the dedication of the trial participants themselves.

Regardless of the results, this trial will yield important information about microbicide effectiveness, safety, use, and acceptability, and will help researchers design and test new HIV prevention technologies.

Food Wars, Part XIV: Conflict on the Menu

We've been posting a lot about food ethics in the last couple of months, so it is fitting that from the NY Times today: "New York City’s new rules for menu labels at chain restaurants have set off a food fight among the nation’s obesity experts.

Most support the theory of the city’s health commissioner that forcing chain restaurants to list the calories alongside menu items — flagging that a Double Whopper With Cheese has 990 calories, for example — will make patrons think twice about ordering one. The rules are set to take effect at the end of March."

However, in a court affidavit seeking to block implementation of the regulations, Dr. David B. Allison, the incoming president of the Obesity Society, argues that more harm could be done than good -- either by contributing to the 'forbidden-fruit allure of high-calorie foods or by sending patrons away hungry enough that they will later gorge themselves even more.'

Whether or not the injunction filed will be successful remains to be seen: The new labeling rules by NYC's Board of Health have support from a number organizations, such as Center for Science in the Public Interest, the American Medical Association, the American Academy of Pediatrics, the American Diabetes Association and the American Heart Association.

Full article and PDF link to the court filings here.

Need a scorecard on healthcare reform?

FactCheck.org, a project of the Annenberg Public Policy Center (APPC) at the University of Pennsylvania, is a great source for nonpartisan information about how what the candidates say matches up with what they do (or have done in the past). Plus, APPC is headed by Kathleen Hall Jamieson, who is a really terrific scholar, writer, and advocate on behalf of the public interest.

Anyway: FactCheck has just posted a nice analysis of how the Clinton and Obama health plans stack up, as well as a review of how accurately the candidates' respective campaign claims reflect their actual plans. You can check it out here.

Yes or No to In Vitro?

The Women's Bioethics Project recently had the opportunity to work with web TV hosts and producers Whitney Keyes and Wyatt Bardouille.  They interviewed one of our book club non-fiction authors, Beth Kohl, about her personal experience with assisted reproductive technologies.  With engaging humor and wit, Whitney, Wyatt and Beth explore the reality of the ART process as well as some of the ethical implications.  Sometimes we get lost in the complexity of ethical debates and forget that these issues affect real people with real stories. Narrative matters.

 

You can watch the segment "Yes or No to In Vitro?" here.  

23 & Me...Cracking the Code

The issue of genetic screening and analysis--the value and expense of it--and whether the testing is necessary or worthwhile--has been raised and discussed on this blog site time and time again.

The decision to do so, as well as the necessity of it, is ultimately in the hands of those choosing to be tested, based upon their own personal situations. But to what degree--is the testing--and the expense--justified? And would you really want to know what manner of disease and possible genetic defects lurk in your gene pool, dormant for now, but awaiting that deadly trigger down the road, certain to release havoc in your body?

ABC Nightline with Martin Bashir, on Wednesday night, profiled a genetic testing firm, called 23andme that obviously believes that we all deserve and need to know the truth, at a time when there's still a chance to correct it.

Boys Suck: Science Proves It

Evolutionary biologist Virpi Lummaa has discovered that Finnish women in previous generations suffered a variety of adverse effects when they bore and raised sons.

Among the impacts: a reduced lifespan, greater vulnerability to disease due to higher testosterone exposure during pregnancy, daughters who were less likely to reproduce, and smaller subsequent children. Additionally, having a grandmother around was more helpful than having a grandfather (probably because she helped with childrearing while he just sat around and ate food).

While modern reproductive technologies have mitigated a lot of the effects seen in pre-industrial families, it is still intriguing to consider these impacts in light of the strong cultural bias favoring the bearing of sons. Perhaps it is a type of "peacock effect", whereby the individuals who still thrive in the face of handicapping or indulging in risky behavior are considered stronger and more robust. Or, as my mother asserts, the value balances out an apparent difference in general robustness and health between male and female young, where males often are weaker to start with.

Of course, having too many sons can be evolutionarily disadvantageous too...

Prejudice and Mentalism: It's All In Your mPFC

Scientific American reports on a study that shows difference in medial pre-frontal cortex activity when distinguishing between people who are part of one's group and who are not.

The experimenters used functional magnetic resonance imaging (fMRI) to scan the brains of Harvard and other Boston-area students while showing them pictures of other college-age people whom the researchers randomly described as either liberal northeastern students or conservative Midwest fundamentalist Christian students. The categories were a ruse.

Heightened activity in the ventral mPFC was associated with mentalization of self-similar people, whereas dorsal mPFC activity was associated with mentalization of self-dissimilar people. But when the participant pondered the subject in situations where an outsider was believed to behave in the same way as the participant would, activity in dorsal and ventral mPFC was equivalent.

With continuing advancements in the field of neuroscience, this study presents some excellent data to help us better understand the roots of prejudice and stereotyping. This study also poses potential challenges for the future since humans have a tendency to follow up discovery with manipulation - how long until someone posits the use of treatment to suppress activity in the parts of the brain responsible for prejudice, discrimination and bigotry? Are these "diseases" to be cured, deficiencies born of ignorance, or simply a part of being human?

A Valentine's Day Gift to our Readers...

Whether you have a special someone with whom to celebrate today or whether you just are a special someone, we wish you a Happy Valentine's Day! And here are just a few links to stories that popped up when I googled Valentine's Day + bioethics:

- Love is a powerful drug: “Love is a drug,” says Helen Fisher, an anthropologist at Rutgers University and author of “Why We Love: The Nature and Chemistry of Romantic Love.” “The ventral tegmental area is a clump of cells that make dopamine, a natural stimulant, and sends it out to many brain regions” when one is in love. “It’s the same region affected when you feel the rush of cocaine.”

- From the Situationist Blog: "It’s all about dopamine, baby, this One Great True Love, this passionate thing we’d burn down the house and blow up the car and drive from Houston to Orlando just to taste on the tip of the tongue.

You crave it because your brain tells you to. . . .Dopamine. God’s little neurotransmitter. Better known by its street name, romantic love. Also, norepinephrine. Street name, infatuation."

- Valentine's Day stories from NPR.

- And for those who prefer to celebrate, ahem, 'privately' or putting it another way, celebrate privacy, a little Valentine's Day gift from a federal court in Texas: A federal appeals court has struck down a Texas law that makes it a crime to promote or sell sex toys, stating that "Whatever one might think or believe about the use of these devices, government interference with their personal and private use violates the Constitution." Full opinion here.

Grocery Store Wars, featuring Cuke Skywalker and Obi Wan Cannoli

Ok, in light of all the recent food ethics posts here, other bioethics blogs, and references to Michael Pollan, someone was bound to make a YouTube video that makes fun of the 'ways of the farm' -- you know, the field that gives rise to all things edible. It pits the lovely organic rebel Princess Lettuce against the 'evil' genetically modified Darth Tater:



So go ahead, have a laugh! Who said bioethicists don't have a sense of humor?

The Logic or Rationale of the DNR Order

Whether we've discussed it or not, we've all thought about the prospect of Do Not Resuscitate Orders (DNRs). In most instances the need for them is no mystery nor does it require rocket science to understand when they become necessary. But now, in 21st century medical science comes the question: when do they not make sense?

See one perspective on a controversial ethics issue here.

Reality check: health disparities

I'll just warn you right up front: election season is getting to me.

We Americans may all be created equal, but substantial -- and shameful, in my view -- disparities in health status exist in the United States. Racial and ethnic minority groups, as well as rural and other underserved populations, bear a disproportionate burden of cancer, heart disease, and myriad other health problems. They have less access to health care, and when they do manage to get care, it's of lower quality.

Yes, it's complicated, and yes, there are lots of factors that contribute. But there's just no getting around the hard numbers on this one. Just to give you an idea of what we're talking about, according to the 2006 National Healthcare Disparities Report:

• Hispanics received poorer-quality care than non-Hispanic Whites* for 77% of core measures. Blacks* received poorer care than Whites* for 72% of core measures. American Indians and Alaska Natives are behind by a mere 41%. What are the "core measures"? Oh, silly little things like whether a woman gets breast cancer screening, or whether kids get dental care.
  
• Here's a shocker: across the board, poor people had worse access to care than the well-off. You really should check out the graph--it's a plain solid bar, representing 100%.
• Health care providers were less likely to inform obese Blacks and Mexican Americans, along with people with less than a high-school education, that they were overweight. These are populations with a higher prevalence of Type 2 (adult-onset) diabetes--perhaps those who could most benefit from a little counseling on this point.
  

The list goes on. Those who want to learn more can check out the National Partnership for Action To End Health Disparities. Meanwhile, here's a question you might want to keep in mind as we learn more about the candidates' plans for health care reform: Is it really acceptable for the richest country in the world to allow this kind of inequity?

When you hear people say that we don't, and won't, and can't allow health care rationing, and that choice is the most important thing, please remember these statistics. We absolutely do ration health care in this country. We just don't talk about the criteria we use to decide who gets it and who doesn't. People who are on the "don't" list don't have any choices at all.

*That's the Feds' classification.