The Point - January 2012
In this edition:
- Stem cell research often not disclosed
- Retardation makes her unworthy of transplant
- A breakdown of society?
- The heartbreak of grief
Excerpt from "Stem cell research on donor eggs often not disclosed," Reuters by Frederik Joelving. December 29, 2011--Many U.S. fertility clinics don't tell egg donors that embryos made from their eggs may end up being used in stem cell research, according to a new government survey. That's despite widespread opposition to such research, which is considered morally offensive by a third of Americans, researchers write in the journal Fertility and Sterility.
They found that among 100 fertility clinics, two said they didn't have a consent form for women donating eggs. Of the 66 clinics that sent in a consent form and said they used excess embryos for research, just 20 told women about that. And only three of 38 clinics that used some embryos for stem cell research in particular disclosed that to donors. "The survey shows that only a minority of IVF (in vitro fertilization) clinics mention to egg donors who are donating for the sake of treatment (as opposed to research) that resultant embryos might ultimately be used in research," said study co-author Gerald Owen Schaefer of the National Institutes of Health in Bethesda, Maryland. "An even smaller minority mention stem cell research explicitly."
"We recommend that all IVF clinics that provide some embryos for research inform egg donors about the possibility of such research (including stem cell research, which is particularly controversial)," Schaefer told Reuters Health by email. That agrees with several organizations such as the National Academy of Sciences and the International Society for Stem Cell Research. Bioethicists not involved in the new study questioned whether disclosing that surplus embryos might be used for research would have an effect on women's decision to donate.
"Getting an egg out of a woman is not like going to the chicken coop and getting an egg," he said. "It is not a completely risk-free endeavor." Yet, there is no federal regulation of IVF clinics in the U.S., according to Raymond De Vries, a social scientist and a professor of bioethics at the University of Michigan Medical School in Ann Arbor. "It's cowboy land out there," he said.
Medical Director of the National Embryo Donation Center Jeffery Keenan, MD (NEDC): "Unfortunately, this story does not come as a surprise to those of us who practice reproductive endocrinology and infertility. Experience tells us that the informed consent process for ARTs (Assisted Reproductive Technologies) is very poor in many centers. Furthermore, the emphasis with the egg donor is almost always on the monetary rather than the altruistic aspect of this process. So, an attitude of 'she was paid for her eggs, that’s all that matters,' is perhaps not so surprising.
"However, infertility doctors also know just how important these embryos are to the couples, and how often they agonize over what to do with remaining embryos following successful treatments. The fact that an egg donor is not herself pregnant with the donated eggs should not constitute reason to dismiss the importance of the new being that they helped to create.
"In these times when so much attention is focused on being sensitive to cultural, racial and sexual differences, shouldn’t we also be just as sensitive to moral and ethical differences? Sadly, this is not the case in our post-modern society. Still, it is encouraging to note that this article was at least published. Now it’s up to us to 'change the culture' in assisted reproduction.
"For the last nine years, the National Embryo Donation Center, working with CMDA, has promoted its mission to facilitate the process of embryo donation and adoption, educate the lay and medical communities so as to increase the practice of these options, and to work to increase respect for the life and dignity of the human embryo. We have been blessed with more than 300 births/ongoing pregnancies, but there is still much work to be done. We are grateful to CMDA for raising a clarion call on this and so many other current controversies which we physicians face on a daily basis!"
Excerpt from "Mom claims in viral blog that disabled child denied transplant," CNN, by Madison Park. January 18, 2012--Can a patient be rejected for a kidney transplant based on a developmental disability? A New Jersey mother alleges in her blog that this happened to her 3-year-old daughter, and it has sparked Internet uproar.Whether a person with a mental disability qualifies for an organ transplant is a decision made on a case-by-case basis, based on that patient's health, experts say. On Thursday, Chrissy Rivera wrote in the blog wolfhirschhorn.org about her latest doctor's visit concerning her daughter, Amelia. Rivera writes in the blog that Amelia was ruled out from receiving a kidney transplant because of her developmental disability. It's not possible to confirm Rivera's story with the hospital because of privacy protection laws. CNN contacted Children's Hospital of Philadelphia, but the hospital said it had no comment other than a statement posted on Facebook.
There are no national guidelines over transplants involving mentally disabled patients. The United Network for Organ Sharing, the private, nonprofit organization that manages the nation's organ transplant system, does not have rules about what to do in cases of patients with mental disabilities. Doctors can refuse to consider a patient for an organ transplant if there is another illness or complications such as a severe infection or cancer that is likely to limit the life span. Mental disabilities should not factor into the decision making for transplants, so long as the patient has strong support from family and caregivers who would ensure that the required medications and care is given, said Dr. Raul de Velasco, the clinical ethics program director at the University of Miami.
"The mental disability should not be the reason why you should not receive a kidney," said de Velasco. The decision should come down to "a medical problem, not the value of the life of a mentally disabled person."On the flip side, patients who have mental disabilities or neurological delays can qualify to be live organ donors after undergoing screening processes and consent from the family.
CMDA CEO David Stevens, MD, MA (Ethics): ""It is ironic that the Americans with Disabilities Act prohibits discrimination on the basis of disability in employment, public accommodations, commercial facilities, transportation and telecommunications, but a child can be denied a lifesaving kidney transplant with impunity. A business can be fined $100,000 because a door is too narrow for a wheelchair, but a transplant specialist can decide a child is not smart enough to receive the hospital’s services.
"Wolf-Hirschhorn Syndrome is a rare genetic disorder occurring in one in every 50,000 births. Three-year-old Amelia has already beaten the 35 percent odds of dying in her first two years of life from developmental retardation, hypotonia, seizures and other defects, but her kidney malformation will soon push those odds to 100 percent. Without a transplant, she will die in six months.
"If the parent's report is correct, it is difficult to defend the decision of the Children's Hospital of Philadelphia's (CHOP) transplant team. A study in 2006 showed the success rate of kidney transplants in intellectually disabled children was 100 percent at one year and 90 percent at three years, equaling the rates in the general population.
"The family has agreed to get a donor from among their extended family, but this raises an ethical issue. It is impossible for a child with a tissue match to give informed consent to undergo the risk because of their age. All the same, Amelia should not be kept off the transplant list because of her intellectual disability. Unless there is something specific about her medical condition that we don't know that makes it impossible to do the transplant, CHOP doesn't have a leg to stand on despite their Facebook protestations that they don't discriminate.
"Sadly, an ethic based on 'quality of life' only, is no ethic at all; yet that concept is increasingly creeping into life-and-death decisions in the halls of medicine. A person's worth is not based on their capabilities but the undeniable truth that all are each made in God's image. We all need to advocate for that ethic, or someday as we age and our capabilities decline, someone will decide a quality of life worth living."
Excerpt from "Many options on TV rules," SCOTUSblog, by Lyle Denniston. January 20, 2012--With one Justice testing the ultimate constitutionality of government controls on broadcast TV, another trolling for an exceedingly narrow approach, two others suggesting that technology may be overtaking the constitutional dispute, one signing himself up for rigorous morality policing and one whose vote may really be crucial staying entirely silent, the Supreme Court on Tuesday wandered widely in its new exploration of the state of profanity and nudity on television and radio. The lively argument in the latest round of that controversy even had a lawyer pointing out portrayals of nudity in the courtroom decorations above the Justices’ heads.
At the end of the hour of argument in Federal Communications Commission v. Fox Television Stations, et al. (docket 10-1293), nothing seemed predictable and, thus, Justice Clarence Thomas’s customary silence may have been the most eloquent expression. The last time the Court heard this case, in an earlier version, Justice Thomas had written a separate opinion essentially dismissing as out of date the constitutional norm of giving broadcasting fewer First Amendment rights than other media enjoy. With only eight Justices taking part this time (Justice Sonia Sotomayor is recused), it may not be possible for a majority to come together without Thomas on its side and, this time, the ultimate constitutional question he raised before is directly at issue.
Quite early in Tuesday’s argument, it was Justice Anthony M. Kennedy who brought up that question. With U.S. Solicitor General Donald B. Verrilli, Jr., at the lectern defending the FCC’s current policy against fleeting use of four-letter words and scripted nudity on TV, Justice Kennedy asked him to spell out “the public value in having different segments of the media governed by different standards” under the First Amendment. The Justice said that, surfing channels, it is not clear what is broadcast TV and what is not, and yet the government was saying “there was still a need for a standard for broadcast television” alone. To finish reading this story please click here.
CMDA Senior Vice President Gene Rudd, MD: "Important social principles are at stake in this case. Fox Broadcasting’s dispute with the Federal Communication Commission (FCC) stems from a fine leveled against Fox for allowing profanity to air during an awards show. (Fox could have used delay technology to prevent this.) Fox claimed the FCC was being inconsistent in its enforcement of profanity and nudity rules.
"On the surface this may seem like an odd case to attract the attention of CMDA. However, the case became more than a question of consistent enforcement of decency rules. During hearings in lower courts, the constitutional question surfaced. Are First Amendment rights breeched when government limits profane speech or explicit visuals? Knowing the harm that such exposure has on the mental health development of minors (not to mention the negative influence it can also have on adults), CMDA voiced its concerns. Along with others, we supported the government’s right to establish and enforce decency rules. Our brief filed with the Supreme Court outlined the deleterious psychological impact exposure to certain content can have on minors.
"While reliable conclusions cannot be drawn from the comments and questions from the Justices, it seemed clear that our concerns were shared by some of them. The ruling is weeks away. The decision might be limited to broadcast TV, but a decision to affirm decency rules would be a positive step in a culture plagued by social decay."
Excerpt from "How Grief Can Break Your Heart," Time, by Alice Park. January 10, 2012--Grief is a powerful emotion, and the latest research shows just how damaging it can be, especially for the heart. The sobering results, appearing in the journal Circulation, are the first to compare how grief affects an individual’s heart-disease risk within a period of time. Previous studies have documented that people losing loved ones tend to have more heart problems than those who aren’t bereaved. In the current analysis, lead author Elizabeth Mostofsky and her colleagues took a unique approach by calculating an individual’s “average loss” of loved ones over a year, by asking how many people study participants had lost in the past year and comparing that figure to the number of loved ones that same person lost during the study period in question, which included the most recent day and week preceding a heart attack.
“We compared these patients’ losses in the recent past of the last day or week before their heart attack to the loss we would have expected to see based on their loss [pattern] over the past six months,” says Mostofsky. “People who have a heart attack are more likely to have lost a person in the recent past than would have been expected based on the number they lost over the past six months to a year.”
That’s not really surprising, but the extent of grief’s effect on the heart was more eye opening. Losing someone raises the risk of having a heart attack the next day by 21-fold, and the risk of a heart attack in the following week by six times. The apparently broken hearts showed signs of mending after about a month, when risk of heart attacks started to decline.
The findings only heighten the need to better understand the myriad ways that grief can affect the body and mind, from changing blood pressure to altering blood-vessel chemistry so clots are more likely to both form and rupture, leading to a heart attack. The emotional distress from a loss can also cause the bereaved to change their lifestyle and either stop taking medications that help their heart or give up on behaviors such as exercising and eating a healthy diet that can keep them healthy as well.
CMDA Cardiologist and CMDA Member Eugene Smith, MD: "The loss of someone close can rend our emotions, steal our pleasure and empty our spirit. The effects ripple through the entirety of our being and are felt by our bodies. Crying, anorexia, sleeplessness and anhedonia are a few of these manifestations. The study by Mostofsky underscores the severity of this bodily effect by demonstrating a marked increase in myocardial infarction at the onset of bereavement.
"Such information highlights some important truths. First is our interconnectedness. We are social creatures. It is not good for man to be alone. God exists in a community (Father, Son and Spirit) and intends for His creation to live in community. When that community loses a member, the loss impacts the entire group. Our presence (or our absence) affects those around us.
"Second is the interaction of body and spirit. Christians recognize that man is more than material, but perhaps we give considerably less thought to the interaction between the material and non-material: they are not dissociated. What we do with our bodies influences our emotion and our spiritual health; alternatively, our emotions and our spirit influence bodily health. A growing body of medical literature shows that grief, anger, anxiety, depression, isolation, social stressors, marital dissatisfaction and even an unforgiving spirit change our physiology and worsen clinical outcomes. To fully address our patient’s physical health, we must consider the psychological, social and spiritual issues confronting them.
"At a time when medicine seems dominated by technologic solutions and squeezed by economic concerns, the Christian physician must remember that the true source of healing is the power of Christ. Our patients need not only our pills and procedures, but also our presence and our commitment to minister to the whole person."