Human Exceptionalism

Life and dignity with Wesley J. Smith.

Media/Obama Conflate Ethics Disputes with “Science”


The media--and I must say, the new Administration--continue to confuse and conflate policy differences with science. And the lifting of the Bush funding restrictions on ESCR is providing the excuse. From the story:
The decision by President George W. Bush to restrict funding for stem cell research has been seen by critics as part of a pattern of allowing political ideology to influence scientific decisions across an array of issues, from climate change to whether to approve the morning-after pill Plan B for over-the-counter sales.
Those are all policy disputes--which belong in the political realm--not science issues. ESCR restrictions were based on important ethical issues. So too Plan B. There isn't a "science" position on whether a powerful contraceptive should be able to be purchased by teenagers as easily as candy and aspirin. The closest to a bona fide science dispute in the above examples is global warming, but the people who are the most "political" are those who say there is no further scientific debate on whether it is happening and whether it is human-caused--when that is patently false.

The MSM and the Science Establishment are part of the Liberal Establishment that wants to take us in certain directions politically and culturally. That's fine, if they were only honest about it. But they don't have the candor to admit they are as political and ideological as their opponents. Instead, they pretend they are objective, indeed, scientific. That may be a good political tactic, but nothing could be further from the truth.

Another Indiciation That Assisted Suicide Isn’t Really About Terminal Illness


Don't get me wrong: I would object to assisted suicide even if it were ever going to be truly restricted to people with terminal illnesses. But of course, that isn't the goal, and it sure isn't the reality. The Final Exit Network illustrate this--although most of the obtuse or biased media continually miss the point, such as Time's hopelessly incompetent reporting

As I have written, FEN has never advocated restricting assited suicide to the terminally ill. The only major American group that does is The Hemlock Society. It didn't used to, but there was a takeover in which the former crackpot model of advocacy led by Derek Humphry--with suicide machine conventions, etc.--was replaced by the smooth and well tailored professional model led by Barbara Coombs Lee and Kathryn Tucker.

With the professional look came a new euphemistic name--Compassion and Choices--more abundant funding, including polling, focus groups, professional PR, etc. C and C now claims to want to restrict assisted suicide, which its focus groups and polling told them to call "aid in dying." But I have yet to see condemnation from Lee or Tucker about the FEN activities that always went well beyond the terminally ill. Moreover, C and C is a member in good standing of the Federation of the World Right to Die Societies, which as I have noted here, does not have a terminal ill restriction in its advocacy statements, and of which one of the arrestees, Ted Goodwin, is vice president.

A recent NPR report--in which a law enforcement agent but no opponents of assisted suicide appeared, which is now real a trend in media--illustrated the vagueness with which the C and C representatives and others have reacted to the FEN charges. From the report (no link):

[NPR correspondent Kathy]LOHR: Another group, Compassion and Choices, lobbies for physician-assisted suicide laws. President Barbara Coombs Lee says outdated laws criminalizing assisted suicide are to blame for this group's practices.

Ms. BARBARA COOMBS LEE (President, Compassion & Choices): People of the Final Exit Network are, kind of testing the boundaries of what is acceptable and unacceptable in these very vague, broad assisted suicide laws. But there are better ways to make laws, you know, than to wait and see what people do on their own, and then go to a court and a trial and a jury and see if that broke the law or not.

Realize that even if an Oregon style law had been in effect in Georgia, John Celmer's alleged assisted suicide would still have been a crime. Hence, FEN would still have been in business to "serve" those for whom the law did not allow legal access to doctors, since it rejects the terminal illness limitation and John Celmer was not dying. Thus unless the assisted suicide license was open to virtually anyone with other than a transitory desire to die, the FEN's of the world would continue their "counseling," and Coombs Lee's statement is nonsensical.

If Coombs Lee really believed her own advocacy meme, she would condemn FEN for both acting outside of the law and in cases well beyond the situation of terminal illness when nothing else can be done to alleviate suffering, the only category for which she claims "aid in dying" is appropriate in her political agitation about the issue.

Sometimes silence is louder than words.

Time Magazine Stinks: Refuses to Get Facts Right About FEN Assisted Suicides


Is it ignorance, laziness, bias, or ineptitude, or all of the above? Not Dead Yet's Stephen Drake exposes why so many people no longer trust so much of what media report: Journalists just can't--or won't--get the facts right, at least about cultural flash issues such as assisted suicide.

Drake, who was interviewed for the article, points out that Time's writer Paige Bowers stated that Kevorkian assisted the suicide of the "terminally ill," when as I have written about so many times, he never once claimed that his assisted suicide activities would be so limited. Moreover, none of the first three assisted suicides were terminally ill as that term is usually defined. Indeed, Marjorie Wantz's autopsy, K's second assisted suicide, showed she (along with at least four others) was not sick at all.

As we have also discussed here at SHS, the FEN explicitly offers to "counsel" suicidal people who are "chronically ill." And yet, Time's reporter made the same false "terminal illness" claim about the group as she did about K. Moreover, as Drake points out, and I have here, the case for which the arrests were made involved a man who had been successfully treated for cancer! From NDY's blog, quoting Drake's letter to Time seeking a correction:

This article could have been something to present a real debate rooted in the current news--whether or not one's perception of one's "quality of life" is a reason for suicide. Instead, the issue has been totally misrepresented as a case in which a group has "helped" terminally ill people in their "right to die" in states that haven't legalized the practice.

In fact, the kind of people this group helps wouldn't be eligible for assisted suicide in Oregon or Washington State...Time magazine failed miserably in its duty to present basic facts accurately. The debate that followed within the article was worthless since it had nothing to do with the story it was supposed to be covering.

I think the public deserves better. Everything I've read about journalist ethics would support that view. I hope that you agree.
I just checked the story to see if it had been corrected. Whaddya know! It has not. From the Time story:

Rather, the group argues that it merely provides a "compassionate presence" for terminally ill people, giving them information about suicide if they request it.

Drake's hope is in vain: Apparently Time's editors don't think the public deserves better.

Pushing Eugenics as “Smart Science”


Bioethicist Jacob M. Appel, who has written that mentally ill people should not be denied the "opportunities" to commit assisted suicide, now pushes mandatory pre-implatation genetic testing in all IVF fertility treatments in order to weed out the unfit (my term) and for whom care would be expensive. But don't call it eugenics! From his column:
The most obvious advantage of mandatory screening is that it will reduce the long-term suffering of the children who are spared disease. At the same time, preventing future cancers will certainly save tax dollars. These savings could be redirected toward researching new therapies and providing quality care for current patients. The money might also help to defer the enormous public costs of fertility therapy, coverage for which a growing number of states now require of private insurance plans...While similar screening cannot realistically be imposed upon individuals conceiving "the old-fashioned way," for obvious reasons of logistics and privacy, these invasive aspects of screening do not apply to IVF.

Opponents of mandatory screening will likely point out that such a rule significantly limits the reproductive autonomy of parents. This is certainly true. However, Western societies have long acknowledged that parental authority cannot undermine the medical interests of a child. Jehovah's Witnesses may not deny their children blood transfusions; Christian Scientists cannot substitute prayer for life-saving antibiotics. As United States Supreme Court Justice Wiley Rutledge wrote in the landmark case of Prince v. Massachusetts, "Parents may be free to become martyrs themselves, but it does not follow that they are free, in identical circumstances, to make martyrs of their children."...

Such crass utilitarian utopianism is precisely what eugenics was all about. And its message is insidious: Those with expensive disabling conditions and diseases are a burden on society and you should not be allowed to be born--as a favor to you!

Then Appel makes a huge gaffe:
The fear expressed by many opponents of genetic screening, both elective and mandatory, is that our civilization is sliding down a slope toward selecting embryos for their skin complexion or their eye-color.
No, the won't do that in the future. No way. They are doing it today!

If IVF can be coupled with mandatory PGD, then every pregnancy can be coupled with mandatory prenatal testing to be sure we weed out all children who are not optimal to the new eugenicists via abortion. Indeed, such mandatory pre natal testing is already being pushed.

And if all else fails, there is always infanticide, as is happening in the Netherlands, with support from some mainstream bioethicists.

Appel is a mainstream bioethicist who is a university professor and has been published in the Hastings Center Report with his call for assisted suicide for the mentally ill. And some bioethicists wonder why I am so worried about the direction in which the bioethics movement seems intent on taking us.

HT: Alice Hatch

Lead Into Gold: IPS Cells Making ESCR “Obsolete?”


The remarkable advances of IPSCs are beginning to subsume ESCR, even among some within the science community. Thus the former head of the NIH and American Red Cross, Bernadine Healy, wrote in U.S News and World Report that IPSC and adult stem cell research successes have "diminished" the prospect that ESCR is the future of regenerative medicine. From her column entitled, "Why Embryonic Stem Cells are Obsolete:
Scientists may be growing impatient, but President Obama has been rightly taking his time in addressing a campaign promise to lift the ban on federal funding for research using new lines of stem cells to be taken from human embryos. Even for strong backers of embryonic stem cell research, the decision is no longer as self-evident as it was, because there is markedly diminished need for expanding these cell lines for either patient therapy or basic research. In fact, during the first six weeks of Obama's term, several events reinforced the notion that embryonic stem cells, once thought to hold the cure for Alzheimer's, Parkinson's, and diabetes, are obsolete.
Some new achievements support this proposition. The newest is the creation of patient specific, tailor made neural cells made from Parkinson's disease patients--and without the viruses used in their creation that some feared could cause cancer. From the story:
Borrowing a biological cut-and-paste trick from bacteria, scientists have created the first personalized stem cells for patients that are free of the cancer-causing viruses and genes needed to make them, according to a study published today in the journal Cell.

The stem cells, derived from skin samples provided by five patients with Parkinson's disease, were first transformed back to the undecided state of cells in an early embryo. Then they were used to make the dopamine-manufacturing neurons that are lost to disease.The technique removes a key barrier to using a special class of stem cells called an induced pluripotent stem cell, or iPS cell, to create replacement parts for patients that could be transplanted without risk of rejection -- the ultimate goal of regenerative medicine. "This is a major advance in the field," said Dr. Marius Wernig, an assistant professor at the Stanford Institute for Stem Cell Biology and Regenerative Medicine, who wasn't involved with the study.
Since IPSCs are pluripotent, we still need to worry about teratoma tumors. But with IPSCs being easy to create and not morally contentious--and adding in the remarkable adult stem cell advances--we might just be able to have a morally uncontentious, medically efficacious regenerative medical sector--and without the brave new world threats posed by human cloning.

Why Can’t Society be Unequivocal in Opposing Suicide?


Relativism is the bane of our times, although it is still selectively applied. We tell teenagers to try not to have sexual intercourse, but if you do--which we know you will--then please use a condom. Yet, we still know how to be unequivocal in some areas: We tell kids, "Don't smoke,!", not, "Don't, smoke--but if you do, only use filter-tipped cigarettes," because we know that if we did that it would only result in a lot of tobacco smoke being inhaled.

It seems to me that well meaning people are being seduced into an equivalent stance on suicide, and it would just result in more suicides. Case in point is the column by Atlanta Journal Constitution pundit Jay Bookman, who in supposedly opposing the Forced Exit Network defendants, has fallen for their basic premise that bad health or disability can justify society facilitating suicide in some cases. From his column:

[S]o do my inalienable rights as a human being extend to the right to self-destruction? If my life is truly my own, shouldn't I be able to end it as I see fit? Personally, I think the answer is almost always no. Societal consensus, backed by medical research and experience, dictates that a person in decent physical health who wants to commit suicide is by definition mentally ill--no fully sane person would make such a decision.

But how far does that line of reasoning extend? As a person's physical health declines, that once-bright line begins to blur for many of us. During the Terri Schiavo controversy, for example, I stumbled across the case of David Mack, a Milwaukee police officer who had been shot in the line of duty and lapsed into a vegetative state. Twenty months later, Mack miraculously returned to consciousness only to be horrified at his predicament. The shooting had left him totally paralyzed; he could communicate only by moving his eyes across a spelling board. He told his wife that he wished the bullet had killed him. He begged for a lethal injection or for feedings to stop. Using the spelling board, he would send the same message over and over: "I D-O-N-T W-A-N-T T-O L-I-V-E L-I-K-E T-H-I-S A-N-Y-M-O-R-E."
Of course, it never occurs to Bookman that Mack, who I don't know about, might one day change his mind. And in that assumption, we see vividly why the disability rights movement is so alarmed by assisted suicide advocacy.

Bookman exhibits the very discriminatory attitudes that could result in disabled people being killed, for by explicitly agreeing that life as a quadriplegic is so bad that it takes suicide ideation out of the "mentally ill" category and into the rational category, he has stated that their lives are not worth saving. Yet medical research actually shows that people who become quadriplegic, if given a chance and proper support services, exhibit no greater levels of depression than the general population five years post injury.

If we say some suicides are worth doing, and others worth preventing, we are both sending a message of abandonment to those we agree should be helped, and making it impossible to convincingly tell others that they shouldn't kill themselves, since by definition anyone who is suicidal finds life unbearable. Moreover, people with mental illnesses often suffer far more anguish than the categories for whom Bookman would apparently permit facilitation--which is precisely why both Switzerland and the Netherlands permit assisted suicide for the mentally ill who are otherwise healthy and able bodied.

Once we agree that society should facilitate the suicides of some people, suicide prevention as an effective intervention is effectively over. Bookman's column is the equivalent of telling teenagers not to smoke, but if they do, to use filter cigarettes.

Refusing to Prevent IVF Moral Anarchy


In his recent book, Imagining the Future, Yuval Levin succinctly identified the source of so many of our cultural problems today. It was a real "Bingo!" moment for me: Society has ceased to be primarily about promoting virtue. Rather, our primary drive as a culture today is to prevent all suffering. In that Quixotic quest, we have created an anything goes society driven by individual desire and yearning that tosses the principle of the common good to the wind.

IVF is a vivid case in point: In the wake of the birth of octuplets via IVF to Nadya Suleman--who had been implanted with six embryos, and due to twinning gave birth to eight babies--legislators in two states are finally seeking to rein in IVF with reasonable regulations based on already published professional ethical guidelines. And I am sure you will be shocked to learn that the efforts have hit the unlimited reproductive freedom wall. From the story:

Lawmakers in two states, outraged by the California mother of octuplets, are seeking to limit the number of embryos that may be implanted by fertility clinics.

The legislation in Missouri and Georgia is intended to spare taxpayers from footing the bill for women having more children than they can afford. But critics say the measures also would make having even one child more difficult for women who desperately want to become mothers. "What they are proposing is a cookie-cutter, one-size-fits-all approach," said Dr. Andrew Toledo, medical director of Reproductive Biology Associates in Atlanta. "Not every couple and not every patient is the same."

Infertility doctors argue that decisions on how many embryos to transfer should be left up to medical experts familiar with a patient's individual circumstances.

Then shut up about Suleman and the doctor who implanted her. Just because you would have made a different choice doesn't give you the right to moralize.

Decades ago Leon Kass warned that IVF, originally created to help infertile married couples have children, would lead to an anything goes mentality. He was mocked, but he was right. We were told then, as we are being told now, that we didn't have to regulate the field because we should trust patients and doctors to make responsible choices.

The difference is that now we know we can't: Unregulated IVF led to overproduction, resulting in hundreds of thousands of frozen embryos. This led to our looking at nascent human beings as objects rather than subjects, natural resources ripe for exploitation in scientific and medical research.

Unregulated IV--ironically along with unlimited abortion--also contributed to the idea that there is an unlimited fundamental right to have a genetically related child--as perhaps millions of children can't find adoptive homes. This, in turn, led to ever more extreme methods to exercise that right--surrogate motherhood, paying eugenically correct young women to risk their lives and health to provide eggs for wealthy couples who want only the most intelligent and beautiful offspring, post menopausal motherhood, using poor women as if they were brood mares, discriminatory sex selection, the eugenic practice of testing and discarding embryos that don't fit our health or cosmetic desires, not to mention contributing to advocacy for human cloning, genetic engineering, and transhumanist utopianism.

This might not have happened had we controlled the technology instead of letting it control us. But now it is probably too late: We have become a society in which even the most reasonable efforts to promote the general welfare almost always lose to Oprah-style hyper emotionalism that focuses on the pain such restrictions might have on individuals rather than on the bigger picture. But the understandable tears of people desperate to have children have been used as the lubricant to produce a reproductive moral anarchy that now includes in that expectation, the right to not only have a child but the child we want, and it is driving us to a new eugenics in which 90% of Down children are aborted and people are throwing away embryos because they might get adult onset cancer or won't have the desired hair or eye color.

This is not to say that we shouldn't care about people's unhappiness and anguish. Of course we should. But their tears have driven us into terminal nonjudgmentalism that prevents us from hitting the brakes to keep from driving off a moral cliff.

The same phenomenon drives other issues of concern to SHS, as well. We are all Wile E. Coyote about to hit the desert floor.

Correction: Final Exit Network’s Ted Goodwin Did Not Resign From The World Federation of the Right to Die Societies


A few days ago I wrote that Ted Goodwin, one of the Final Exit Network assisted suicide defendants, was a mainstream figure in the assisted suicide movement. He certainly is that. But I made an error by writing that he had resigned as vice president of the World Federation of Right to Die Societies. As far as I know he didn't. He resigned as head of the Final Exit Network. That means he is still in line to be the World Federation's president starting in 2010. Mea culpa.

Arrest in Thrown Away Baby Who Survived Abortion--Only to Die in Medical Waste Bag


Readers of SHS will recall the awful case of the baby who survived a late term abortion only to be--allegedly--put in a medical waste bag and literally thrown away. The abortionist already lost his license in the case, and now there has been an arrest. From the story:
An abortion clinic owner is accused of delivering a live baby during a botched procedure and then throwing the infant away. Belkis Gonzalez, 42, was arrested Tuesday and charged with practicing medicine without a license and tampering with evidence, both felonies, said Ed Griffith, a spokesman for the Miami-Dade State Attorney's office. If found guilty, Gonzalez would face at least a year in prison and up to 15 years.
I was pretty outraged that the charges were practicing medicine without a license, etc. I thought they should include murder, or at the very least, manslaughter. But then I saw this part of the story:
Authorities were unable to definitively determine the cause of death--and Gonzalez's role in it--because the baby's body had decomposed by the time it was found eight days later, said Griffith, the attorney's office spokesman.
Covering up the alleged crime clearly paid in this case. I also hope the Feds weigh in with a violation of the Infant Born Alive Protection Act.

Intervention and Prevention: The Proper Response to Request for Hastened Death


The assisted suicide movement has the media eating out of the palm of its collective hand, by often getting reporters to adopt their lexicon--the euphemistic "aid in dying" as opposed to the accurately descriptive "assisted suicide"--and writing as if suicide were a necessity--even though the cases from Oregon show that almost all assisted suicides involve fears of loss of dignity or of burdening others, etc. And the media virtually never mention that proper hospice care includes intervention and prevention whenever a patient requests to end it all through suicide.

But some in the medical professions still understand the ethical and truly compassionate practice of medicine and nursing. An article in Oncology Nursing News about a continuing medical education class encouraged me. From the story:
Patient and family requests for hastened death usually reflect unmet needs rather than a desire to control the circumstances of death, Boston hematologist Janet Abrahm, MD, said during an education session on pain management and palliative care at the recent annual ASH meeting. The unmet needs often relate to a desire for increased communication with care providers, better symptom control, or acknowledgment of emotional distress or crisis. Clinician responses run the gamut and in some cases can even exacerbate the unmet needs.
That is certainly what I was taught as a hospice volunteer. And here's the kicker:
Regardless of personal or professional feelings about hastened death, providers must respond to such requests, rather than ignore or deny them.
Dr Abrahm suggested a multistep response that would include the following: Acknowledge the request and make sure it has been understood: Clarify the underlying causes, just as a clinician would clarify causes of physical symptoms; Evaluate the patient's decision-making capacity; Evaluate the patient for depression and risk of suicide and determine whether the patient has a plan to hasten death; Be aware that an immediate psychiatric evaluation is indicated for any patient who has a death plan.
This last part is totally ignored by the "death with dignity" crowd. In Oregon in 2007, no requesters for assisted suicide were referred for a mental health consultation--and remember treatment is not required under the law. Last year, according to the newly published virtually worthless assisted suicide annual report from Oregon, only 2 out of a reported 88 requests and 60 assisted suicides resulted in a referral to mental health professionals. This despite only 3 of the requests involving worries about pain control.

For anyone interested in the report and its details, Alex Schadenberg presents an analysis on his blog.

Three Babies Born From Cloning?


I don't believe a word of it. The notorious Italian fertility doctor claims that nine years ago he was able to bring three cloned babies to birth. From the story:
A controversial Italian doctor known for his work allowing post-menopausal women to have children has claimed in an interview to have cloned three babies who are now living in eastern Europe. "I helped give birth to three children with the human cloning technique," Severino Antinori, a prominent gynaecologist, told Oggi weekly in an interview to appear Wednesday. "It involved two boys and a girl who are nine years old today. They were born healthy and they are in excellent health now." He did not provide proof of his claims, but said cells from the three fathers, who were sterile, allowed the cloning to be carried out. The women's egg cells were impregnated in a laboratory through a method called "nuclear transfer," he said.
So let me get this straight: Scientists all over the world have not been able to create cloned embryos and maintain them past the first few days of development. But nine years ago Antinori not only cloned successfully, but also implanted the resulting embryos for gestation and to birth, and moreover, unlike many animals, they have no health problems--and publicity hound that he is he kept quiet about it all these years?

Remember the Raelian's making fools of the media years ago when the group claimed the same thing? It was nonsense then, and this is nonsense now.

Hospice Organization Reacts to FEN Lawyer Slander


The other day I posted about how a lawyer for one of the Final Exit Network defendants said that hospice is just assisted suicide in slow motion. This is dangerous demagoguery that could convince people not to seek the benefits that hospice can provide. The National Hospice and Palliative Care Organization has now issued a press release rebutting the baseless charge. From the release:

"Hospice compassionately cares for people who are near the close of life--but hospice isn't about how you die, it's about how you live. Hospice and palliative care focuses on how dying persons and their loved ones live each day, providing comfort and guidance along the way," said J. Donald Schumacher, president and CEO of National Hospice and Palliative Care Organization. "The quote from that news article demonstrates a callous disregard for all those who receive care, including family caregivers, from our nation's hospice programs."...

- Hospice focuses on caring, not curing and, in most cases, care is provided in the person's home.
- Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities.
- Hospice services are available to patients of any age, religion, race, or illness.
- Hospice provides bereavement support to families for 12 months following the death of their loved one.
- Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.
- Research has shown the Medicare beneficiaries that opted for hospice care as opposed to other medical interventions when faced with a terminal illness lived on average 29 days longer than those who did not receive hospice care.

I am aware of the stories of abuse in some hospice cases. They make me sick, but I don't believe they are typical. And there is a problem with whether tube-supplied food and fluids are considered comfort care or life-extending treatment--a matter the government should remedy by regulation.

But I have been a hospice volunteer. I have seen the tremendous good it does, including with my own father who died in hospice care from colon cancer. A wonderful friend who died of breast cancer a few years ago, received such good care she and her husband were able to enjoy a lingering lunch at her favorite restaurant with Secondhand Smokette and me only two or three days before she died at home surrounded by her family.

Hospice is important. It is truly compassionate. It must not be corrupted with the assisted suicide virus. I am glad that the NHPCO leadership felt strongly enough about this respond to that lawyer's nonsense.

Pushing to Experiment on Alzheimer’s Patients


The Hastings Center published an article in its journal IRB: Ethics and Human Research ("Including Persons with Alzheimer Disease in Research on Comorbid Conditions," 31, no. 1 (2009): 1-6) that I found both alarming and a sign of the increased desire among some in the bioethics and science communities to instrumentalize the most weak and vulnerable among us. The article by Anji Wall, a student at the Center for Healthcare Ethics, Saint Louis University, is not about using Alzheimer's patients in experiments to understand the condition or find treatments for it. Rather, she wants to open up Alzheimer's patients to the study of "cormobid" conditions--that is the presence of two or more diagnosable maladies at the same time--such as heart disease, arthritis, diminution of vision, etc. that are not directly related to Alzheimer's.

Of course, the proposal is couched in terms of being beneficial to these patients since treatment of ancillary maladies experienced by Alzheimer's patients can improve the quality of their lives. (I am getting whiplash here. Other bioethicists have called for denying expensive interventions to Alzheimer's patients based on futile care type arguments and social justice rationing principles.)

However, I think this is actually a rationalization to gain access to a large cohort of compliant patients who can't decide for themselves, to study medical conditions that are not unique to Alzheimer's patients, and for which subjects can be found with decision making capacities to participate in human trials.

But the author writes as if excluding Alzheimer's patients from such research--again that is not related to understanding or treating Alzheimer's itself--is required as a matter of social justice, since these patients could conceivably benefit from therapies that are developed. From the paper (no link available):
The inclusion of individuals with Alzheimer disease in research studies on comorbid conditions is also required for scientifically valid trial design. Phase III and IV clinical trials are designed to include a sample of individuals that is representative of the population who might use the experimental treatment. Considering that the prevalence of Alzheimer disease is 5% in persons 65–75, and close to 50% in persons over 85, individuals with the disease constitute a significant proportion of the elderly population. Therefore, if a study involves a medication likely to be used by the elderly because it is intended to treat a condition common to this population, researchers should recognize that a significant proportion of the target population will have Alzheimer disease, and persons with the disease should be included in the trial in order to study a representative sample of the population. Thus, both the framework of social justice and scientific validity justify the inclusion of individuals with Alzheimer disease in research on comorbid medical conditions.
Never mind that these subjects could be at greater risk because of the inability to communicate well about what they are experiencing. The Nuremberg Code clearly states:
The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
Moreover, the subject has to be able to call a halt, which would not be true with Alzheimer's patients:
During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.
Alzheimer's patients are individuals, not part of a "group" that will unjustly benefit from treatments if they are not experimented upon. This is particularly true given that there is nothing unique about diseases that afflict the elderly such as glaucoma or congestive heart disease as they affect Alzheimer's patients vis-a -vis their non afflicted peers.

This article is just the latest in a growing chorus to instrumentalize the cognitively devastated, such as the call to use unconscious patients in animal organ transplant experiments. The issue isn't whether some Alzheimer's patients might be indirectly benefited along with other elderly people, from the treatment of heart disease or eye maladies. The issue is that they have no ability to defend themselves. No matter the soothing bioethicseze of "social justice" employed to rationalize the proposal, Wall's suggestion actually seeks to justify the instrumental use of the weak by the strong. As such, it should be rejected in the most blunt and unequivocal terms.

New Eugenics: Selecting Embryos for Eye and Hair Color


Remember when we were told that IVF, coupled with pre-implantation genetic diagnosis (PGD), would only be used to prevent serious genetic health maladies from being passed to the next generation? That was never true, of course. The intent was to get people to accept the principle that parents should be able to design their children, and that kind of thing is best promoted via the example of serious illness--just as in assisted suicide.

But anyone who thought such restrictions were ever intended to--or would--remain in place other than as a temporary political expedient, please contact me so I can sell you a bridge known as the Golden Gate.

Predictably, once it was widely accepted that parents should be able to decide not only to have children via IVF fertility treatments, but to decide which they want and don't want, well why restrict the right to reject unwanted embryos to those with genetic illnesses? After all, cosmetics often matter to a person's success in the world. And who wants a child one doesn't find attractive? So why not toss embryos because they will have dark skin or the wrong color eyes to match with the house's decor?

But Wesley, no one would be that shallow about their own children! Oh no? From the story:

A US clinic has sparked controversy by offering would-be parents the chance to select traits like the eye and hair colour of their offspring. The LA Fertility Institutes run by Dr Jeff Steinberg, a pioneer of IVF in the 1970s, expects a trait-selected baby to be born next year.

His clinic also offers sex selection...

This involves testing a cell taken from a very early embryo before it is put into the mother's womb. Doctors then select an embryo free from rogue genes--or in this case an embryo with the desired physical traits such as blonde hair and blue eyes--to continue the pregnancy, and discard any others.

Dr Steinberg said couples might seek to use the clinic's services for both medical and cosmetic reasons. For example, a couple might want to have a baby with a darker complexion to help guard against a skin cancer if they already had a child who had developed a melanoma. But others might just want a boy with blonde hair.

So much for unconditional love of children.

We are constantly told that the right of a woman to reproduce is absolute, including getting pregnant, aborting if the pregnancy is ever unwanted, and now, genetically engineering progeny to order. But no "right" is absolute. The time has long since past to put some regulatory controls over the wild, wild west of IVF.

Lead Into Gold: IPS Cells Advances Continue


President Obama still hasn't rescinded the Bush stem cell policy. He will, but it may matter a lot less than people once thought. The IPSC advances continue, opening the door possibly for a way forward in biotechnology that all Americans can support. And, it is reported in the Washington Post! From the story:
Scientists have developed what appears to be a safer way to create a promising alternative to embryonic stem cells, boosting hopes that such cells could sidestep the moral and political quagmire that has hindered the development of a new generation of cures.

The researchers produced the cells by using strands of genetic material, instead of potentially dangerous genetically engineered viruses, to coax skin cells into a state that appears biologically identical to embryonic stem cells. "It's a leap forward in the safe application of these cells," said Andras Nagy of Mount Sinai Hospital in Toronto, who helped lead the international team of researchers that described the work in two papers being published online today by the journal Nature. "We expect this to have a massive impact on this field."
The IPSCs are already being used in drug testing and etc. But can't be used in patients:
The alternative cells, known as induced pluripotent stem cells, or iPS cells, appear to have many of the same characteristics as embryonic stem cells but are produced by activating genes in adult cells to "reprogram" them into a more primitive state, bypassing the moral, political and ethical issues surrounding embryonic cells. Until now, however, their use has been limited because the genetic manipulation required the use of viruses, raising concerns the cells could cause cancer if placed in a patient. That has triggered a race to develop alternative approaches. "These viral insertions are quite dangerous," Nagy said.
Well, so are embryonic stem cells. Pluripotency itself is a problem due to potential tumor formation, and if the stem cells come from "leftover" embryos, immune rejection issues--which is why with the exception of the Geron approved trial, they haven't been used in humans. And the story doesn't get into the amazing adult stem cell successes in early human trials, which are patient specific and don't appear to pose the tumor threat.

Be that as it may, let us all hope the IPSC advances continue. If they work, it could bring about a rapprochement between both sides of the great ESCR debate, while not opening the door to human cloning.

World Federation of Right to Die Societies: Free the Final Exit Network “Georgia Four”


I knew the assisted suicide crowd would try to make the four defendants in the assisted suicide of a man who had been treated successfully of cancer, but was undergoing difficult reconstruction surgery and needed a hip replacement, into some kind of civil rights-type heroes. Toward this end, some assisted suicide promoters have labeled them, "The Georgia Four." Meanwhile, the Board of Directors of the World Federation of Right to Die Societies has issued the following statement, demonstrating that the movement does not want to limit assisted suicide to the terminally ill:

The Board of the World Federation of Right-to-Die Societies is very concerned by the recent arrest in Georgia of its Vice Chairman, Ted Goodwin, and others. Many of us have known Ted for several years and regard him as a most compassionate individual.

Regarding the possible reasons for his arrest, we want to stress that desperate terminally-ill individuals and those suffering greatly from incurable chronic illnesses often look for a peaceful death when their suffering is more than they can bear.

This is already legally possible in Oregon and Washington State, in the USA; and in Europe, in Belgium, The Netherlands, Switzerland, and soon in Luxembourg. In the absence of rational laws, organizations such as Final Exit Network sometimes may get close to the line in challenging the law, as perceived by opponents of the right to choose.

The Board of the World Federation of Right-to-Die Societies supports legal change so that those who are terminally-ill, or suffering greatly from incurable chronic illnesses, can obtain a legitimate way to achieve a dignified, humane death.
Oh, can the fake nobility. The "Georgia Four" weren't "challenging" the law, which is what is done in civil disobedience when one publicly disobeys a law considered to be unjust--and then takes the consequences. Whether they committed a crime or not, the "Georgia Four" skirted the law and then carefully covered their own tracks wherever they went. Nelson Mandella and Martin Luther King they are not.

Man Who Died in Accused Final Exit Network Assisted Suicide Had Beaten Cancer


John Celmer, the man whose death is the subject of the Final Exit Network assisted suicide criminal charges, was not terminally ill. Indeed, he had apparently beaten his cancer. From the story:
John Celmer was making what his doctor considered “remarkable progress” last spring after two surgeries to reconstruct his jaw.

The 58-year-old Cumming man faced hip replacement surgery for arthritis, but he appeared to have won a battle against head and neck cancer. Then, he was found dead.
"His doctor was shocked," said Forsyth County Coroner Lauren McDonald III. "He said he shouldn’t have died." McDonald said an autopsy confirmed that Celmer, who smoke and drank, was cancer-free at death; the man had died from asphyxia suffocation resulting from the inhalation of helium. The death was ruled a homicide.
Repeat after me: Assisted suicide is not about terminal illness, it is about near death on demand.

Lawyer for Final Exit Network Slanders Hospice


Assisted suicide advocates pretend that they support hospice, but their work undermines the entire concept, or at least, twists it into something that would be unrecognizable by its creator, Dame Cecily Saunders. But now a lawyer named Michael Kaminkow, who is defending two of the Final Exit Network assisted suicide defendants, has gone so far as to slander hospice. From the story:
"Whatever happened here is no more than what happened in a hospice," said Michael Kaminkow, an attorney representing two of the network members arrested Wednesday. "In reality, a hospice is a suicide. It's just a little slower."
Shame on Kaminkow. First, hospice isn't about causing life to end. It is about alleviating suffering and promoting human community and dignity for people with terminal illnesses and their families. Second, in 1997 the Supreme Court ruled 9-0 that refusing unwanted life-sustaining medical treatment, which is part of the hospice program, is not the same thing as suicide or assisted suicide. Third, sometimes people in hospice don't die, but get better. Finally, the man who his clients are accused of assisting in suicide was not terminally ill. He had previously had jaw cancer, but he had not experienced a recurrence of the disease.

Perhaps this is ignorance talking. But it is a cruel ignorance.

Fear Mongering for Assisted Suicide


There she goes again--meaning Compassion (Hemlock Society) and Choices head Barbara Coombs Lee--pushing the baloney that assisted suicide is only about preventing unalieviable suffering for the terminally ill. Worse, she engages in irresponsible demogoguery about proper care of dying patients. From her Huffington Post article:
Let's be clear. The policies on end-of-life decisions in every state except Oregon, Washington and Montana are merciless and irrational. Dying patients are abandoned to their agonies and any talk of assistance in their dying occurs in hushed, confused tones. A decent society must do better.
Well, that's not only fear mongering of the worst kind, but it is also a slander to the good work of hospice professionals, who most definitely do not abandon patients "to their agonies." Moreover, it completely glosses over the important public policy reasons for resisting legalized assisted suicide as well as the real experience of Oregon, touted by Coombs Lee in other venues, where patients commit assisted suicide for reasons such as worries about being a burden, fear of losing dignity, or worries about losing the ability to engage in enjoyable activities. These are important existential issues that often require professional intervention to alleviate. But assisted suicide interferes with that process, and hence, proper hospice care, by definition. And, in fact, patients receive lethal prescriptions in Oregon who are not experiencing significant symptoms.

Plus, C and C believes that unbearable agony is whatever the patient says it is, meaning that there are no principled standards in this regard that can apply. Plus, the Oregon guidelines are often not followed, as exposed by Kathleen Foley, the country's most prominent palliative care physician, and psychiatrist Herbert Hendin, an expert on suicide prevention. Plus, about Montana, which Coombs Lee also mentions, C and C's Kathryn Tucker has opposed the state enacting many of the very guidelines that Coombs Lee claims protect patients in Oregon and Washington.

This piece is a defensive one that seeks to put some distance between C and C and Final Exit Network, due to the recent arrests. It might work, but it shouldn't. It is worth noting that Coombs Lee never condemns FEN in her article. More to the point, FEN is as mainstream in assisted suicide advocacy as is Compassion and Choices. Where they really differ is in tactics. In this regard, Coombs Lee has the more cagey approach, I think, but FEN the more honest.

Obama to Revise or Rescind Bush Conscience Clause?


It was a given that the Obama Administration would attack the "Bush Conscience Clause." And that process has begun. But it may a revision rather than a rescission, and indeed, perhaps one I could support. From the story:
The administration took the step because the regulation was so broadly written that it could provide protections to health care workers who object not only to abortion but also to a wide range of health care services, said the HHS official, who asked not to be named because the process had just begun.

"We've been concerned that the way the Bush rule is written it could make it harder for women to get the care they need. It is worded so vaguely that some have argued it could limit family planning counseling and even potentially blood transfusions and end-of-life care," the official said. After a 30-day comment period, the regulation could be lifted entirely or it could be modified to make the protections more specific, the official said.

"We support a tightly written conscience clause. We recognize and understand that some providers have objections about abortion, and we want to make sure that current law protects them," the official said. "We want to be thoughtful about this."
I too thought that the Bush Regulation was too broadly written--for example, it could be construed to apply to futile care impositions--and was disappointed in its lack of nuance. Thus, if the rule were revised, rather than rescinded, so as to protect health care workers who refuse elective procedures, e.g., not needed to protect the life of or to prevent serious harm to the physical health of the patient, and moreover, to ensure that it is the procedure (such as assisted suicide) and not the patient that is objected to, a better federal conscience clause could come out of this.

However: I think there is a more than even chance that the reasonable tone is all politics and will not survive the actual rule revision process. I will keep an eye on this as the bureaucratic process grinds slowly forward.


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