The Point - October 17, 2013
In this edition of The Point:
- Proposed treatment to fix genetic diseases raises ethical issues
- Autistic boy “debarked” to prevent screaming
- Physicians prepare to deal with increased demand, strain on practices under ObamaCare
Excerpted from “Proposed treatment to fix genetic diseases raises ethical issues,” Shots: Health News from NPR. August 14, 2013 -- The federal government is considering whether to allow scientists to take a controversial step: make changes in some of the genetic material in a woman's egg that would be passed down through generations. Mark Sauer of the Columbia University Medical Center, a member of one of two teams of U.S. scientists pursuing the research, calls the effort to prevent infants from getting devastating genetic diseases "noble." Sauer says the groups are hoping "to cure disease and to help women deliver healthy, normal children."
But the research raises a variety of concerns, including worries it could open the door to creating "designer babies." Specifically, the research would create an egg with healthy mitochondrial DNA (mtDNA). Unlike the DNA that most people are familiar with—the 23 pairs of human chromosomes that program most of our body processes—mtDNA is the bit of genetic material inside mitochondria, living structures inside a cell that provide its energy.
Scientists estimate that 1 in every 200 women carries defects in her mtDNA. Between 1 in 2,000 and 1 in 4,000 babies may be born each year with syndromes caused by these genetic glitches; the syndromes range from mild to severe. In many cases, there is no treatment, and the affected child dies early in life. "We have developed a technique that would allow a woman to have a child that is not affected by this disease, and yet the child would be related to her genetically," says Dieter Egli of the New York Stem Cell Foundation.
But this is all still very controversial. First of all, the baby would be born with genes from three different people: from the father, from the woman trying to have a healthy baby, and from the woman who donated the healthy egg. There are even bigger concerns, which start with whether the technique is safe for the resulting infant, and whether by trying to fix one problem, scientists may inadvertently introduce mistakes into the human genetic code. That's why this sort of thing has always been off-limits — even banned in many countries, according to Marcy Darnovsky of the Center for Genetics and Society.
CMDA CEO David Stevens, MD, MA (Ethics): “Germline genetic engineering, where a portion of the egg or sperm’s genome replaced, changed or supplemented, is unethical, unnecessary and unsafe. It crosses a bright line in the bioethical sand labeled, ‘That shalt not!’
“It is unethical because it permanently changes the child’s genes and any unforeseen consequences that occur are passed on to every generation that follows. Thus, it violates the ethical principle of autonomy. How does the doctor get informed consent from their grandchild yet to be conceived? Some of the techniques proposed involve destroying human embryos, not just manipulating women’s eggs. For example, some propose discarding female embryos created and only implanting male embryos to avoid the risk of passing on an inheritable defect.
“It is unnecessary. Women who have an identified high risk with a high mutation load, (under 18 percent mutations of mtDNA, there is 95 percent certainty of no risk) already have the option of not having children, adopting, utilizing a donated egg, preimplantation genetic diagnosis and prenatal diagnosis with abortion. Some of these options are unethical because they destroy life, but they are legal. Scientists are trying to justify germline manipulation so that women with this genetic liability might have the option of having a child with their genes. While this ambition is understandable, because there are alternatives, and because there are significant risks to generations of offspring, we should prohibit this option.
“It is unsafe. This type of genetic manipulation is not human cloning but uses similar techniques that have been associated with serious problems when used in animals—large organ syndrome, malformations and miscarriages.
“The ‘hard cases’ have been historically used to justify crossing the ‘bright lines’ in bioethics. We saw this in abortion, but once society agreed that abortion was justified because the mother didn’t want a child because of rape, incest or a genetic defect, it soon became justified for a woman not wanting a child for any reason. In other countries, physician-assisted suicide was justified for patients who had lives ‘not worthy to be lived’ because they were terminally ill and suffering. Now it is allowed for any reason the patient conceives that their live is unworthy to live. It is not unreasonable to predict if society says germ line manipulation is okay to avoid having a child with an imperfect genome that society will soon open the door for germline genetic engineering in the quest for perfect children.”
Excerpted from “Autistic boy ‘debarked’ to prevent screaming,” BioEdge. October 5, 2013 -- Controversy has arisen around a procedure performed on an American autistic boy to stop him from screaming. At the request of his parents, Kade Hanegraaf had his vocal cords separated so as to greatly reduce his ability to scream.
The family chose the operation after three years of enduring the boy's uncontrollable screaming—a high pitched cry louder than a lawn mower that he would make more than 1,000 times a day. According to the boy's mother, Vicki Hanegraaf, the behavioral problem was destroying the family. They were unable to take the boy anywhere, and his brother, also autistic, was highly sensitive to the loud cries.
According to a case report in the Journal of Voice, the boy can now only produce a scream half as loud, and his “episodes” have been reduced by 90 percent. The operation, called a thyroplasty, is said to be reversible. The boy's family is happy with the outcome, but others in the autistic community have criticized their decision. Some have described it as torture and compared it to debarking a dog.
Bioethicist Arthur Caplan defended the decision: "21st century medicine gave Kade and his family a solution that has already allowed the boy to live a richer life -- and the solution can be reversed at any time. That seems to me to be cause for celebration, not condemnation."
However, an autism rights activist told Salon that the operation was profoundly unethical. “There is a long history of family members and providers viewing these behaviors as strictly a medical phenomenon and not recognizing they’re important for communication. To violate a person’s bodily autonomy and damage their ability to communicate to serve the convenience of the caregiver is nothing short of horrific.”
CMDA Member and former member and chair of the CMDA Ethics Committee Nick Yates, MD, MA (Bioethics): “Parents should be and are allowed to make healthcare decisions for their minor children (and those who cannot be granted decision-making authority) under a best interests model. Traditional and more commonplace care is easier to accept, but sometimes not only is the treatment a bit unusual and unconventional, but the best interests extend from the individual to the family. Patient autonomy and decision-making capacity are extremely important considerations, and thoughtful communication is how these notions are expressed and preserved. However, if one can only communicate in deafening screams and exhibits little social grace, how is autonomy and decision-making imputed in a meaningful manner? These are extremely difficult decisions where pundits—nearly all of whom have not and will never experience the extreme medical situation—love to wage commentary.
“The family followed traditional care recommendations—behavioral and medical management—for nine years with no persistent improvement. Following surgery, vocalization frequency and intensity dropped significantly, socialization improved, he began to speak better and his appetite improved.
“Children do indeed need protection, and social services are appropriate, but children also must have an advocate, and so rights activists and external guardians may be necessary. In this case, neither is necessary as the family's choice is ethically permissible (and medically reversible), and should not be condemned."
Excerpted from “Physicians prepare to deal with increased demand, strain on practices under ObamaCare,” Fox News. October 1, 2013 -- As enrollment in ObamaCare begins, physicians throughout the country are preparing to deal with an influx of newly insured patients – as well as the increased financial demands this will place on their practices. While it will take a few years for doctors to fully determine how they will be affected by ObamaCare, some physicians are already anticipating the need to make major changes to the way they run their practices.
One of the most immediate changes that physicians in these areas expect to see is an increase in patients seeking preventive health care – something many avoided when uninsured. However, scheduling more routine check-ups and screenings may place a strain on already short-staffed practices in rural areas. As a result, some doctors are considering handing over some basic aspects of patient care and education to nurses, nurse practitioners, or physicians assistants in order to treat patients more efficiently. Dr. Jason Marker, of Wyatt, Indiana, is already looking to hire additional staff members in order to meet the increased needs in his community.
Rural areas throughout the country already face a shortage of primary care physicians and doctors like Marker fear that this problem might become exacerbated in coming years, as more patients have the means to seek regular care.
“We know definitively that health insurance coverage and access to a physician are what improve health care outcomes.” Marker said. “We’re about to get changes in coverage, but we don’t have a ready way to say, ‘Here’s another million family doctors.’ So there’s a pipeline problem where it will be another five to 10 years where we are able to get the volume of doctors to take all these patients.”
Marker said Congress will need to step up in order to help fix this problem. “The big weak link is whether or not Congress is willing to put additional dollars into family medicine residential training,” Marker said. “That’s the current bottleneck in the training pipeline, is having residency slots. It doesn’t do good to have residents interested if there aren’t slots to do training.”
CMDA CEO David Stevens, MD, MA (Ethics): -- When we went as missionaries to Africa, Jody knew we would be far from the grocery store yet entertaining many guests, so she bought a cookbook called More With Less. That phrase succinctly describes the focus that every healthcare professional will need as we move forward. There are going to be more patients to see than ever before but not enough physicians to see them. Though more medical schools are opening, including two Christian ones, there are not enough residencies being funded. Physician assistant and nurse practitioner schools are expanding to help fill in the gap, but the problem is bigger than that.
According to leading economic John Maudlin, reimbursement rates are going to plunge by 25 percent in the next five years. (I encourage you to read the eye-opening article.) The Cleveland Clinic now collects $6 billion a year and expends $5.5 billion. They are projecting their income to plunge to $4.4 billion by 2018, despite a significant increase in their patient load, as commercial insurance companies on average go from paying $.38 on the dollar billed to $.26. (Medicare now pays $.23 and Medicaid $.18.) Since 60 to 80 percent of their cost is for personnel, that is where cost savings will have to be realized. That is why you are already hearing of hospitals and practice groups laying off staff and if those staff are rehired elsewhere, they probably will be paid less.
CMDA’s Executive Vice President Gene Rudd, MD, told those attending the CMDA Midwest Regional Conference a few weeks ago that they would all need to become missionary doctors…but not necessarily by going overseas. They will have to have a missionary's mentality of working very hard and not getting paid as much, but doing it because God has called them to minister through medicine.
Though we will all being doing "more with less" I believe that the opportunities to minister through healthcare are going to be greater than ever! God does His best work in the midst of crisis and change if we simply rest and trust in Him!