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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

Ethics, Fertility, Genetics, In the News, Pregnancy, Stanford News

Daddy, mommy and ? Stanford legal expert weighs in about “three parent” embryos

Daddy, mommy and ? Stanford legal expert weighs in about "three parent" embryos

3519855504_9000d95a2aIt’s an interesting question that got a lot of traction in the media last week. Does the contribution of a tiny amount of DNA from a third person during in vitro fertilization really mean that the resulting child would have three genetic parents? Researchers in Oregon have proposed the technique as a way to avoid genetic diseases arising from faulty mitochondrial DNA by replacing an egg’s mitochondria with one from a second, healthy woman either before or after fertilization with a man’s sperm. They’ve shown that it works in monkeys, and the FDA met last week to consider whether the technique is safe enough to be used in humans.

Yesterday, Stanford law professor and bioethicist Hank Greely, JD, posted a great analysis of the topic on the university’s Law and Biosciences blog, complete with an elegant explanation of the problem for women with mitochondrial DNA mutations:

The mitochondria (high school biology’s “energy powerhouses of the cell”) have their own very short stretch of DNA, separate from the 6.8 billion base pairs found on 46 chromosomes in the cell’s nucleus (the nuclear DNA).  The 16,569 base pairs of the mitochondrial DNA (hereafter “mtDNA”) hold 37 (some say 38) genes, providing instructions for making 13 (or 14) proteins and another 24 RNA molecules.  The full importance of these genes is unknown, but it is clear that some (happily rare) variations in the mtDNA cause quite severe illnesses. Unfortunately, each child gets all of its mitochondria (and hence its mtDNA) in the egg from its mother; if the mother’s mtDNA is dangerously flawed, so will be the mtDNA of all her children. With almost all other genetic diseases, no matter how inevitably the “bad” genetic variation leads to a disease (how “penetrant” the genetic variation is), a woman will have only a 50% or 25% chance of passing on the condition.  With these, her genes can give rise to no healthy children.

Greely gets at the heart of the matter when he compares the statistically minute contribution from the donated mitochondria to a hypothetical child he calls Heather:

I have DNA from four people in each of my cells:  my mother’s mother, my mother’s father, my father’s mother, and my father’s father. Actually, my DNA really came from all eight of my great-grandparents, and all 1024 of my great great great great great great great great grandparents, and all roughly one million of my great (18) grandparents. Yes, all that DNA passed through my (genetic) parents before coming to me, but why does that matter?

Heather gets her DNA from more than two people a bit differently from the way the rest of us do, but so what? How does getting what is, in effect, “gene therapy,” where the gene is delivered in a natural package called the mitochondrion, turn our hypothetical (and healthy) child into a powerful argument against the procedure?

It shouldn’t.  Heather will not be getting superpowers, she will not be in any meaningfully way “designed” (except to avoid a nasty genetic disease), and she will not be given a newly made DNA sequence never before found in the human gene pool. She will get mitochondria with mtDNA that will allow her to have normal health, not a grave disease. That mtDNA will have been taken from a woman, who, though not a source of Heather’s nuclear DNA, is certainly a participant in the human gene pool.

“Heather has three parents” is NOT an argument. It is an irrelevant but attention-getting slogan that is uncritically put forward as, and sometimes mistaken for, a real argument. Yes, the proposed process is a way of bringing forth living and healthy babies that is somewhat new and different, but so were obstetric forceps, (safe) C-sections, and in vitro fertilization. Novelty is not, in itself, a respectable argument against it.

Previously: Medical practice, patents and “custom children”: A look at the future of reproductive medicine, Five million babies and counting: Stanford expert offers conversation on reproductive medicine and Stanford researchers work to increase the odds of in vitro fertilization success
Photo by Christian Pichler

Ethics, Medicine and Society, Stanford News

Stanford ethicist discusses brain death

Stanford ethicist discusses brain death

What exactly is “brain death?” And how does it differ from what you and I think of as death? That question and others are answered in this Q&A with David Magnus, PhD, director of the Stanford Center for Bioethics, who co-wrote a perspective piece on the topic that appears today in the New England Journal of Medicine. In that piece, he and his co-authors explained why the laws and ethics governing brain death should not be changed.

When asked by my colleague why he believes families (such as that of this young California girl) shouldn’t be able to determine when a loved one is dead, Magnus had this to say:

The line between life and death is legally, ethically and medically important. It determines when someone has full constitutional protections under the law, when someone’s will takes effect, whether someone is still married and when physicians are obligated to provide life-sustaining medical treatments. It also determines the line where it is allowable to procure organs. Without brain death, there would be little to no cadaveric organ procurement in the United States, leading to thousands of deaths every year.

It is important that these lines be drawn in ways that are medically and philosophically defensible. Imagine if we decided that parents could decide when their children are mature enough to be allowed the status of adulthood. Some 40-year-olds would never get to vote or make decisions, while some 10-year-olds would. Instead, we draw a clear boundary at age 18. If a religious minority decides that patients are adults at age 13, it does not follow that the law should be different for them. Similarly, there needs to be a bright line drawn by professionals who can reliably and accurately distinguish between life and death, as we distinguish between child and adult…

Applied Biotechnology, Ethics, Events, Genetics, Stanford News

Coming soon: A genome test that costs less than a new pair of shoes

Coming soon: A genome test that costs less than a new pair of shoes

Air JordansScarcely a week ago, a leading genomics company, Illumina, announced it could sequence a human genome for the new, low price of $1,000. This week attendees at a personalized medicine conference heard a Silicon Valley startup say it would get the price down to $100.

Either price is a steep drop from the $2 million it cost in 2007 to sequence the genome of DNA discoverer James Watson, PhD. Illumina, a San Diego-based company (and one of Stanford’s partner  in a just-funded stem cell genomics center), claimed the $1,000 price in a Jan. 14 announcement on its latest sequencer model. CEO Jay Flatley said the achievement shows that science has “broken the sound barrier” in the race to make genome sequencing affordable for medical care.

Speaking Monday at the sixth annual Personalized Medicine World Conference in Mountain View, Calif., Flatley predicted that genome sequencing would one day become so widely used in bedside medical care that it would be regarded as a “molecular stethoscope.”

Skeptics at the conference questioned whether a $1,000 genome test could include all the interpretation and analysis necessary to make the raw data useful for patients. But within minutes of the question, another company stepped up to say it was already working on a test that would lower the cost even more to $100.

“At $100, you get to be really competitive,” said Stefan Roever, CEO of Genia Technologies, a startup based in Mountain View, during a panel presentation at the conference. Genia is using a different method, called nanopore-based sequencing. The start-up was part of a consortium with Harvard Medical School and Columbia University that won a $5.25 million grant in September from the National Human Genome Research Institute to develop the technology.

The PMWC conference was a mix of academic researchers, companies commercializing the genomics, and venture capitalists checking out the new crop of start-ups. Stanford was represented by Stephen Quake, PhD, professor of bioengineering; George Sledge, MD, professor of medicine; and a multitude of others. Also making presentations were LeRoy Hood, MD, PhD, head of the Institute for Systems Biology in Seattle, and Eric Green, MD, PhD, director of the National Human Genome Research Institute.

Amir Dan Rubin, president and CEO of Stanford Hospital & Clinics, gave a keynote talk at the start of the conference. Stanford Hospital & Clinics was one of the cosponsors of the conference, held Jan. 27-28 at the Computer History Museum in Mountain View.

Donna Alvarado is a Bay Area-based writer and editor who volunteers at the Stanford Health Library and finds inspiration in medical and health topics.

Previously: Stanford researchers work to translate genetic discoveries into widespread personalized medicineWhole-genome fetal sequencing recognized as one of the year’s “10 Breakthrough Technologies”New recommendations for genetic disclosure released and Ask Stanford Med: Genetics chair answers your questions on genomics and personalized medicine
Photo by rondostar

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