Published by
Stanford Medicine

Category

Ethics

Ethics, Genetics, Medicine and Society

Film documents rise and fall of a genome matching service – and poses tough ethical questions

Film documents rise and fall of a genome matching service - and poses tough ethical questions

Jesse_01When I think of “science fiction,” I picture three-eyed aliens with purple-and-gold tentacles — not the disturbing demise of a man, and a company, depicted in the film “The Perfect 46.”

Nor do I expect to ponder the ethics of a company that strives to produce genetically “pure” children.

Yet this is precisely the type of science fiction filmmaker Brett Ryan Bonowicz dished up to a sold-out Stanford crowd last week. Following the film, an all-star panel of genetics experts fielded questions.

The film’s premise is simple, and alluring. People can send their sequenced genome, along with their partner’s,  in to a company called The Perfect 46 and allow its proprietary algorithm to figure out if their children will be born genetic-defect free — or not.

“Jesse [Darden, the company’s CEO] wasn’t going to cure the diseases, he would just breed them out. It made a lot of people uncomfortable,” said one of the characters in the film.

So uncomfortable, in fact, that the company, and its leader Jesse Darden, played with a standout performance by actor Whit Hertford, unravels quite thoroughly – with Darden’s painful personal and professional demise forming the meat of “The Perfect 46’s” somewhat-tortured plot.

For me, the ethical quandary is a no-brainer: perfect – what fun is that? My husband and I are both far from perfect, and if we had a perfect child, it certainly wouldn’t be anything like us.

More seriously, however, the film poses thorny questions about the future of consumer genetics, a boom-and-bust field that’s both promising and terrifying. “The Perfect 46” doesn’t answer these questions, but the post-screening panelists delved into some of them.

During the talk, the experts made  it clear the technology featured in the film isn’t there – yet. Right now, if scientists sequence a genome , they don’t know the meaning of the many versions, or allele , of the gene that pop up. “Often, we don’t know if it’s disease-causing or not,” said panel member Michael Snyder, PhD, Stanford professor and chair of genetics.

Although the film takes place in the “near future,” corporations that provide basic genetic screening are already available, the experts said. And corporations may not be providing adequate counseling for potential parents, panel member Sandra Lee, PhD, a senior researcher at the Stanford Center for Biomedical Ethics, pointed out.

The Stanford-heavy audience seemed to dig the movie, but I thought the film would be more effective if its lessons were a little subtler and its pace a bit quicker.

Still, the questions it asks are real, even pressing, and not science-fictiony at all.

Becky Bach is a former park ranger who now spends her time writing, exploring, or practicing yoga. She’s currently a science writing intern in the medical school’s Office of Communication & Public Affairs.

Previously:Stanford patient on having her genome sequenced: “This is the right thing to do for our family”, Stanford geneticist discusses genomics and medicine in TEDMED talk, New recommendations for genetic disclosure released and A conversation about the benefits and limitations of direct-to-consumer genetic tests
Screenshot of movie courtesy of Clindar

From August 11-25, Scope will be on a limited publishing schedule. During that time, you may also notice a delay in comment moderation. We’ll return to our regular schedule on August 25.

Ethics, Events, Health Policy, Medicine and Society, Public Health, Transplants

Stanford Health Policy forum on organ-donation crisis now available online

Stanford Health Policy forum on organ-donation crisis now available online

The latest Stanford Health Policy Forum, which focused on ways to end our country’s organ-donor shortage, is now available online. More than 100,000 Americans currently need organ transplants, and the panelists discussed a variety of solutions for solving the problem. Among the ideas brought to the table was a compensation system for donors – an option that was also the focus of an article in today’s San Francisco Chronicle.

Previously: At Stanford Health Policy Forum, panelists dig into the issue of organ donationHow can we end the donor organ shortage?, Stanford visiting professor and founder of kidney-exchange program wins Nobel economics prize and One gift saves three young lives 

Ethics, Events, Health Policy, Stanford News, Transplants

At Stanford Health Policy Forum, panelists dig into the issue of organ donation

At Stanford Health Policy Forum, panelists dig into the issue of organ donation

Sally Satel, MD, was a practicing psychiatrist with a long history of scholarly research and policy-making in health care when a diagnosis of kidney failure popped her across the line that separates doctors from patients. Without a transplant or dialysis, the 16 percent of function left in her kidneys wouldn’t last long, and she became one of the 60,000 people in the U.S. waiting for a deceased donor kidney. That was in 2004.

One decade later, there are more than 100,000 people on that list. Last year, according to the National Kidney Foundation, just over 14,000 people received donated kidneys, a number that has remained flat since 2007. About 18 people die every day waiting on the list; another 12 are taken off the list daily because they have become too sick to survive transplant surgery. Satel was lucky – an acquaintance volunteered after others had bowed out – and Satel did receive a life-saving kidney transplant.

We need a transparent, safe and ethical system of exchange

From that unexpected experience, Satel wrote a book, ‘When Altruism Isn’t Enough: The Case for Compensating Kidney Donors,” to highlight the shortage. She also became a vocal advocate for changes in the organ donation system that could improve those increasingly dire numbers. This week, she joined a couple of thousand health professionals and interested others at the 2014 World Transplant Congress in San Francisco and also came here to participate in a Stanford Health Policy Forum on organ donation. She spoke alongside David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, and Tom Mone, former president of the Association of Organ Procurement Organizations.

The forum was hosted by the office of Lloyd Minor, MD, dean of the medical school. “Our Health Policy Forums were created to serve as a platform for experts from Stanford and across the globe to discuss important and sometimes controversial medical topics,” he said in a post-event interview. “Our hope is that fostering dialogue on issues of critical importance to our clinicians and patients will take us one step closer to developing solutions.”

At the forum, moderator/Stanford professor Keith Humphreys, PhD, began the conversation by asking Satel what it was like being on the waiting list. “It was extremely difficult,” she answered. “You’re really put in a position of facing years of dialysis (and the wait for a deceased donor kidney) can be five years. In Los Angeles, it’s almost 10 years. The average person doesn’t survive that long.” Asking friends and family isn’t easy either, she said: “You are asking someone to give you a body part.”

Satel has proposed a system of rewards – “not, a check, but some sort of in-kind incentive like a contribution to a charity or a 401k,” she said. “We need a transparent, safe and ethical system of exchange.”

The ethics of such a compensation system is what worries Magnus, who told the audience:

Every time we’ve drawn a line — ‘Here’s what we think is acceptable’ — [it’s] almost always been erased and moved somewhere else… Because of the incessant drumbeat of need, there’s a tendency to move and move the line, and maybe those moves are okay and appropriate, but it makes the slippery slope very, very, very steep. We have had only two absolutes: the rule that prohibits taking organs while people are still alive and the prohibition of payment. Both of these principles are now under attack.

Continue Reading »

Ethics, Events, Health Policy, Stanford News, Transplants

How can we end the donor organ shortage?

How can we end the donor organ shortage?

organ donorOur country’s organ shortage is an issue of critical importance – especially to the more than 100,000 Americans currently waiting for an organ transplant. In the words of Stanford’s Keith Humphreys, PhD, “Everyone agrees that 18 people dying each day on transplant waiting lists is unacceptable, but there is fierce disagreement about what to do about it.”

Next week, Humphreys will moderate a panel discussion that delves into the issue. He’ll be joined by three experts – including Stanford bioethicist David Magnus, PhD – who will discuss the effect of the organ donation on our country’s overall health and debate the ethical and practical aspects of proposals to solve the problem. Among the most controversial proposed approach and something that will be vigorously debated: paying people to donate their organs.

The event, part of Stanford’s Health Policy Forum series, will be held on July 28 at 11 AM at the Li Ka Shing Center for Learning and Knowledge, in room LK130. For those local readers: It’s free and open to the public, but space is limited. More information can be found on the forum website.

Previously: Students launch Stanford Life Savers initiative to boost organ donation, Full-length video available for Stanford’s Health Policy Forum on serious mental illness, Stanford forum on the future of health care in America posted online and Stanford Health Policy Forum focuses on America’s methamphetamine epidemic
Photo by Mika Marttila

Ethics, In the News, Research, Transplants

Physicians more likely to become organ donors, Canadian study finds

Physicians more likely to become organ donors, Canadian study finds

When receiving advice from a physician, one might wonder what the doctor would choose for him- or herself. Recently we discussed here a study on doctors’ preferences for their own end-of-life care. Now, a study published in the Journal of the American Medical Association has reported on physicians’ views and behavior surrounding their own organ donation.

As a news@JAMA piece reports on the Canadian study, physicians are nearly 50 percent more likely than non-physicians to register as an organ donor. More from the piece:

Despite waiting lists for organs in many countries, the percentage of individuals registered in national organ donation registries in most countries is below 40%. The United States fares a bit better than average, with 48% of adults registered as organ donors.

Concerns about organ donation have led to lower-than-average rates of registration in Ontario, Canada, where only about 25% of adults have registered. Currently, there are more than 1500 people on transplant waiting lists in Ontario.

Study author Alvin Ho-ting Li, BHSc, a PhD candidate at Western University in Ontario, Canada, discusses the study’s purpose and findings further in a Q&A section of the piece.

Previously: More on doctors and end-of-life directivesStudy: Doctors would choose less aggressive end-of-life care for themselvesStudents launch Stanford Life Savers initiative to boost organ donation and Family ties: One sister saves another with live liver donation

Ethics, Genetics, Medicine and Society, Parenting, Pediatrics, Stanford News

Genome testing for children: What parents should consider

Genome testing for children: What parents should consider

Genome testing: Would you do it?

Okay, next question: Would you have your child’s whole genome tested?

In the recent issue of Stanford Medicine News, Louanne Hudgins, MD, chief of medical genetics and director of perinatal genetics at Lucile Packard Children’s Hospital Stanford, weighs in on the issue: “I strongly advise parents against whole-genome testing for their children unless performed in the context of a medical evaluation following formal counseling regarding its utility, limitations and possible unrelated findings,” she said.

In the piece, Hudgins comments on privacy and ethics considerations, and explains why what we partially know (for instance, if your child is found to have a gene predisposing him or her to a disease) can sometimes provide more cause for worry or false hope than helpful or conclusive information.

The whole piece (a short one) is worth a read.

Previously: Stanford patient on having her genome sequenced: “This is the right thing to do for our family”, Personal molecular profiling detects diseases earlier, Stanford geneticist discusses genomics and medicine in TEDMED talk and Medical practice, patents, and “custom children”: A look at the future of reproductive medicine

Ethics, Research, Sexual Health, Sports, Stanford News, Women's Health

“Drastic, unnecessary and irreversible medical interventions” imposed upon some female athletes

"Drastic, unnecessary and irreversible medical interventions" imposed upon some female athletes

Four female athletes were required to undergo “partial clitorectomies” and gonadectomies (removal of gonads) as a result of the current gender-policing polices of major sports governing bodies, according to an article published this week in the British Medical Journal.

The article, co-written by Stanford bioethicist Katrina Karkazis, PhD, raises concerns that new policies that use testosterone testing to determine eligibility for elite female athletes accused of having “male-like attributes” have resulted in unnecessary interventions that are both “invasive and irreversible.” The paper was timed to coincide with an editorial that she and Barnard College’s Rebecca Jordan-Young, PhD, wrote for the New York Times, which was previously discussed here.

Karkazis told me that both the journal article and the editorial were written in response to a case study published last year in the Journal of Clinical Endocrinology and Metabolism by physicians who conducted the medical procedures on the four female athletes. The athletes, ages 18-21 and all from developing countries, had tested high for naturally occurring testosterone levels. Their identities remain confidential, but the physicians who performed the surgeries and wrote the report acknowledged that there was no medical need for the procedures, which have been used as treatments for intersex conditions. Karkazis and colleagues argue that not only is there no medical benefit to such procedures, they also make no difference to athletic ability. From the journal article:

Clitoridectomy is not medically indicated, does not relate to real or perceived athletic “advantage,” and is beyond the policies’ mandate. Moreover, this technique is long eschewed because it has poor cosmetic outcomes and damages sexual sensation and function. Clitoral surgery should have no role in interventions undertaken for athletes’ eligibility or health.

Karkazis and her colleagues go on to refute the logic of using testosterone level testing in women as grounds for exclusion from competition as having no scientific grounds, and quote sports officials as saying that female athletes with unusually high naturally occurring testosterone levels have no more competitive advantage that other elite athletes. Karkazis and Jordan-Young wrote in the Times:

Sports officials (the report does not identify their governing-body affiliation) sent the young women to a medical center in France, where they were put through examinations that included blood tests, genital inspections, magnetic resonance imaging, X-rays and psychosexual history… Since the athletes were all born as girls but also had internal testes that produce unusually high levels of testosterone for a woman, doctors proposed removing the women’s gonads and partially removing their clitorises. All four agreed to undergo both procedures; a year later, they were allowed to return to competition.

Quite simply, these young female athletes were required to have drastic, unnecessary and irreversible medical interventions if they wished to continue in their sports.

Previously: Arguing against sex testing in athletes, Is the International Olympic Committee’s policy governing sex verification fair? and Researchers challenge proposed testosterone testing in select female Olympic athletes

Dermatology, Ethics, Health Costs, Research, Stanford News

Drug samples lead to more expensive prescriptions, Stanford study finds

Drug samples lead to more expensive prescriptions, Stanford study finds

drugs on money - big

It’s been years (fortunately) since I’ve needed a prescription for anything more than a simple antibiotic. But when I did, I remember I was always thankful on those occasions when my doctor offered a free sample of a medication to try before (or sometimes instead of) pulling out the prescription pad. I appreciated the chance to see if a medication would work for me, and I was happy for any opportunity to save myself (or, at times, my insurance company) a few dollars. The fact that the samples were invariably for drugs that were still on patent (known as brand name drugs or branded generics) to a particular company certainly escaped me.

Now, a study by Stanford dermatologist Al Lane, MD, highlights the dark side of such free samples, which are provided to doctors by the pharmaceutical companies who make the drugs. The research, along with an accompanying editorial, is published today in JAMA Dermatology. As Lane comments in my release on the work:

Physicians may not be aware of the cost difference between brand-name and generic drugs and patients may not realize that, by accepting samples, they could be unintentionally channeled into subsequently receiving a prescription for a more expensive medication.

Specifically, Lane and medical student Michael Hurley found that dermatologists with access to free drug samples wrote prescriptions for medications with a retail price of about twice that of prescriptions written by dermatologists without access to samples. All of the patients had the same first-time diagnosis of adult acne. The difference is nothing to sniff at – $465 for docs who accepted samples and about $200 for docs who did not. What’s more, the overall prescribing patterns of the two groups of physicians showed almost no overlap. Physicians without access to samples prescribed mainly generic drugs (83 percent of the time), whereas those with access to samples prescribed generics much less frequently (21 percent of the time). Only one drug of the top ten most commonly prescribed by physicians without access to samples even made it into the top ten list of physicians who did accept samples.

The distribution of free drug samples in this country is big business. It’s been estimated that pharmaceutical companies give away samples of medications with a retail value of about $16 billion every year. But many physicians feel the availability of samples doesn’t sway their prescribing choices, and instead feel the samples allow them more flexibility to treat their patients. Lane himself thought so, until Stanford Medicine prohibited physicians to accept samples or other industry gifts in 2006. As he explains in the release:

At one time, we at Stanford really felt that samples were a very important part of our practice. It seemed a good way to help poorer patients, who maybe couldn’t afford to pay for medications out-of-pocket, and we had the perception that this was very beneficial for patients. But the important question physicians should be asking themselves now is whether any potential, and as yet unproven, benefit in patient compliance, satisfaction or adherence is really worth the increased cost to patients and the health-care system.

Clearly Lane has had a change of heart, in part based on the data in the study. Now he’s hoping to get the word out to other physicians. He and Hurley conclude in the paper, “The negative consequences of free drug samples affect clinical practice on a national level, and policies should be in place to properly mitigate their inappropriate influence on prescribing patterns.”

Previously: Consumers’ behavior responsible for $163 billion in wasteful pharmacy-related costs and Stanford’s medical school expands its policy to limit industry access
Photo by StockMonkeys.com

Behavioral Science, Ethics, Medicine and Society, Research, Stanford News

Breaking down happiness into measurable goals

Breaking down happiness into measurable goals

sunflowersSo you want to be happy. Can you be more specific? A study published in the Journal of Experimental Social Psychology found that concrete, rather than abstract, goals for happiness tend to be more successful. Jennifer Aaker, PhD, Stanford social psychologist and marketing professor, and colleagues performed six field and laboratory experiments and found that participants who performed specific acts of kindness – such as recycling or making someone smile – reported greater happiness than participants whose prosocial goals were less precise – such as helping the environment or people more broadly.

From a Stanford News article:

The reason is that when you pursue concretely framed goals, your expectations of success are more likely to be met in reality. On the other hand, broad and abstract goals may bring about happiness’ dark side – unrealistic expectations.

Acting directly and specifically in service to others brings greater happiness to the giver, the study found. The piece continues:

For example, an experiment involving bone marrow transplants focused on the whether giving those who need bone marrow transplants “greater hope” – the abstract goal – or giving those who need bone marrow transplants a “better chance of finding a donor” – the concrete goal – made a giver more happy.

The answer: Helping someone find a donor resulted in more happiness for the giver. This, the researchers wrote, was driven by givers’ perceptions that their actual acts better met their expectations of accomplishing their goal of helping another person.

Previously: Study shows happiness and meaning in life may be different goalsAre you happy now? Stanford Roundtable spotlights the science of happiness and wellbeing and Stanford faculty and students launch social media campaign to expand bone marrow donor registry
Photo by Iryna Yeroshko

Ethics, In the News, Sports, Stanford News, Women's Health

Arguing against sex testing in athletes

Arguing against sex testing in athletes

Testosterone does not a man – nor a woman – make. So argues Stanford medical anthropologist Katrina Karkazis, PhD, in a New York Times op-ed today. She cites evidence against the scientific and ethical soundness of sex-testing policies used since 2011 by sports governing organizations including the International Olympic Committee, the Fédération Internationale de Football Association and the International Association of Athletics Federations.

From the piece:

Rather than trying to decide whether an athlete is “really” female, as decades of mandatory sex tests did, the current policy targets women whose bodies produce more testosterone than is typical. If a female athlete’s T level is deemed too high, a medical team selected by the sport’s governing bodies develops a “therapeutic proposal.” This involves either surgery or drugs to lower the hormone level. If doctors can lower the athlete’s testosterone to what the governing bodies consider an appropriate level, she may return to competition. If she refuses to cooperate with the investigation or the medical procedures, she is placed under a permanent ban from elite women’s sports.

Sports authorities argue that screening for high T levels is needed to keep women’s athletics fair, reasoning that testosterone improves performance. Elite male athletes generally outperform women, and this difference has been attributed to men’s higher testosterone levels. Ergo, women with naturally high testosterone are thought to have an unfair advantage over other women.

But these assumptions do not match the science. A new study in Clinical Endocrinology fits with other emerging research on the relationship between natural testosterone and performance, especially in elite athletes, which shows that T levels can’t predict who will run faster, lift more weight or fight harder to win. The study, of a sample of 693 elite athletes, revealed a significant overlap in testosterone levels among men and women: 16.5 percent of the elite male athletes had testosterone in the so-called female range; nearly 14 percent of the women were above the “female” range.

Karkazis concludes, “Barring female athletes with high testosterone levels from competition is a solution to a problem that doesn’t exist. Worse, it is pushing young women into a choice they shouldn’t have to make: either to accept medically unnecessary interventions with harmful side effects or to give up their future in sports.”

Previously: Is the International Olympic Committee’s policy governing sex verification fair?, Researchers challenge proposed testosterone testing in select female Olympic athletes and Gender ambiguity gets attention

Stanford Medicine Resources: