The Help and what it means to be human

I am currently reading The Help by Kathryn Stockett. I saw the movie first and as I read the book it really is true the book is better, even though the movie is very well done. For those who haven’t done either one, the story is about a young white woman in Jackson, Mississippi who decides to write a book that tells the stories of African American maids working for white families in Jackson in the early 1960s. But the book, like her book, is mostly about those women and the truth of what their lives were like.

As I experience their lives in the midst of the novel I have been thinking about the ethical issues that were going on during the turbulent times of the civil rights movement in the sixties. The major issues revolve around what it means to be human and how one human being should treat another. That resonates with what is at the heart of many of the issues we face in bioethics today.

Aibilene is the first of the maids to agree to tell her story. Interestingly she is a woman with a strong Christian faith who writes out her prayers to God and sees him answer as she expresses her concern mostly for others and occasionally for herself. She models virtues of love and compassion while hurting from the injustice of life in a world where she is not seen as a person of full moral value. She is not perfect, but her virtues and endurance under hardship demonstrate a humanity that touches me. It is amazing that as a society we could have told her she was not fully human.

How many are being told today that they are not fully human by the things our society chooses to do?

Death and Dying in the Land of Paradise

My father just turned 85.  He resides with my mother, who is suffering from Alzheimer’s disease, in an assisted care facility.  As I witness my father’s health gradually deteriorate, I wonder what it must be like to know that death is likely close-at-hand.  He is currently unable to accomplish tasks that I take for granted, such as bending over to pull up his pants, or making it to the bathroom in time.  Yet, even in his current state, it could be much worse.

A recent (October 17) ABC news report presents the story of Jeri Orfali, a promising software executive who, at 56, developed ovarian cancer.  Jeri and her husband of 30 years were living in Hawaii at the time of her death.  The report describes her final days of bearing “excruciating pain that was not helped by palliative care.”  According to her husband, “In the end I could see tumors coming out of her legs and in her neck,” he said. “Her legs were swollen and her stomach was so bloated, the cancer almost burst out of her. She couldn’t get her next breath.”[1]

As a result of the experience, Robert Orfali (the husband) would like Hawaii to legalize physician-assisted suicide.  In fact, apparently it was “legal” in Hawaii as far back as 1909 based on the following stipulation for PAS:

[W]hen a duly licensed physician or osteopathic physician pronounces a person affected with any disease hopeless and beyond recovery and gives a written certificate to that effect to the person affected or the person’s attendant, nothing herein shall forbid any person from giving or furnishing any remedial agent or measure when so requested by or on behalf of the affected person.”

As a result, advocates for PAS believe that it is now time to establish a legalized ‘death with dignity.’  Of course, the movement to support PAS has its critics.  The Catholic Church and other right-to-life groups fear the potential consequences of PAS and call for Hawaiians to resist PAS’s legalization.  Indeed, previous attempts to legalize PAS in Hawaii were overturned (by a narrow margin) through opposition groups.  Thus, there is a significant divide that pits those who fear the negative results of PAS against those who view end-of-life care as insufficient.

Frankly, I struggle with this.  As a Christian, I have strong convictions against taking matters into our own hands; PAS, I believe, is wrong from a biblical/theological standpoint.  Yet we live in a secular society, one that does not necessarily share my beliefs.  I would oppose the legalization of PAS in America, but I base my opposition on the view that God is sovereign over life and death.  Honestly, I can understand why a person without theistic principles would think that PAS should be permitted.

In next week’s blog, I will present some of my theological conclusions about death and dying.  In the meantime, what do you think are some of the strongest arguments against PAS outside of Scripture?


[1] Susan Donaldson James, October 17, 2011.  http://abcnews.go.com/Health/retired-hawaiian-doctors-test-102-year-physicians-assisted/story?id=14739855&singlePage=true

Researcher Cannot Tell Patients His Findings…but He’s Allowed to Publish Them

It’s the stuff of prime time drama. A geneticist is conducting research on a particular family who has had a several baby boys with symptoms that include thick, wrinkled skin and who end up dying of heart problems in their first year. The geneticist suspects a genetic disease, and sets out to compare the genes of this family with other genomes. His data points to a particular genetic mutation that is likely the culprit. One of the women in the family, who has the mutation, became pregnant during the studies, but the geneticist could not tell her that she is a carrier because his analysis had not been confirmed in a national lab. As per the Clinical Laboratory Improvement Amendment, he is not permitted to give patient’s health information until his tests have been confirmed in a national lab. She had the baby. The baby had the disease, and died the same week that the geneticist published the paper announcing the genetic cause for the disease. Paper publication was permitted before telling his research subjects.

However, this isn’t fiction. The geneticist is Gholson Lyon and the situation is reported in Nature News. From the report:

Lyon knew from his study that the mother carried the mutation. But he was not allowed to tell her, because the analysis had not been performed in a laboratory that was certified under the Clinical Laboratory Improvement Amendments, which aim to ensure that clinical tests are accurate and reliable.

The baby was eventually born with the disease — called Ogden syndrome — and later died, in the same week that Lyon’s paper on the causative mutation was published.

There are three ethical issues that need to be addressed here:

  1. What is the reasoning behind prohibiting researchers from giving their subjects medical information?
  2. What is the impact of knowing about a possible mutation?
  3. What would be the impact of genetic screening of a fetus?

First, Dr. Lyon was not able to give any of the family members information stating that certain individuals may be carrying a gene that causes this disease because his studies had not been confirmed in an accredited lab. After this situation, Dr. Lyon recommended at the Personal Genome meeting at Cold Spring Harbor Laboratory “that researchers should routinely conduct their studies in certified laboratories so that they can provide participants with results as soon as possible…he plans to do so himself from now on.” The Clinical Laboratory and Improvement Amendments is a tome of information on how research on subjects should be conducted, including quality assurance, on every area ranging from chemistry to virology to immunology. Go here to download the PDF or read it online.

These amendments are likely in place to protect human subjects and provide a rigid set of guidelines for research. They are also likely in place to protect the researcher from lawsuits. While guidelines are important, the reasoning behind the guidelines should be prioritized rather than upholding the guidelines at all costs. Protecting the human subjects should be the priority. Perhaps Dr. Lyn could have informed the family of his findings, but with the proper qualifications. For example, he could ask the family’s permission to share his findings, and state that these findings are not conclusive.

Second, there are implications for someone knowing that they have a disease-liked mutation. In this case, certain family members are carriers, and their health is not necessarily affected. This knowledge could affect their decisions on whether or not to have children. However, with the advances in sequencing the human genome, scientists are finding that oftentimes the genetic factors contributing to a disease are more complex then were once thought. The genome does not always operate in a one-to-one correlation. For example, there are several factors that code for traits like hair color, not just one gene for hair color or eye color. It is not a simple case of one gene coding for one trait. Scientists have found genetic markers for several diseases; however, given the complexity of the genome, when a new mutation is identified and suspected as a link to a genetic disease, care and investigation are needed to confirm a direct genetic link.

Third, there are ethical implications for identifying genetic factors in fetuses. Based on the results we have seen in identifying Down ’s syndrome, some parents choose to abort a fetus that shows the genetic markers for the disease. In the case of Ogden Syndrome above, the child will likely not reach its first birthday, so does the parent have a right to know the risk? This situation can be compared to anencephaly, in which the baby is missing a large part of his or her brain and skull. The baby usually dies several days after birth. However, anencephaly has a more conclusive diagnosis than Ogden Syndrome does . If Dr. Lyn had told the woman about the mutation, would she have aborted the baby? That would be a risky decision to make, especially given that the disease-mutation link was still in research stages.*

This is not an easy situation; one can see the justification both for the guidelines and for a researcher being allowed to tell his patients his findings. There are privacy factors, protection of the fetus, human subject rights, and the responsibility of the researcher. Furthermore, the genome is turning out to be far more complex than many scientists had once thought, calling into question several assumptions in medical genetics. However, we want to use what information from genomic testing we have to make informed medical decisions now.

 

*I am not necessarily advocating abortion as the best or only option in cases where babies have a grim prognosis. This is a delicate and difficult matter that is beyond the scope of this post.

Note: This post was corrected on 10/19 from its original publication on 10/17.

Managing Patients

Many people remember C.S. Lewis not only as a gifted thinker but also as someone who was very funny.  Funny in a typically British, understated, often-profound way.  When reading That Hideous Strength, the last book of his Space Trilogy, I laughed again and again at his many references to the National Institute of Co-ordinated Experiments.  Yes, you got that right: the N.I.C.E.  This vast array of committees and investigators would finally bring a “really scientific era” to managing society, and eventually all the ills of the country would be deciphered and cured.   And of course building this grand enterprise meant bulldozing a large part of a quiet university town—all for the sake of noble, or at least “nice,” goals.  True, one might have to keep the citizenry in the dark on what actually was going on inside the N.I.C.E., but of course this would be for their benefit.  (“You musn’t experiment on children; but offer the dear little kiddies free education in an experimental school attached to the N.I.C.E. and it’s all correct!”)  The book is great commentary on misguided human endeavors and is prescient on many of the bioethics matters of today.  But what is most entertaining is that the N.I.C.E. is indeed alive and well in the United Kingdom: the National Institute for Health Clinical Excellence, a.k.a. NICE.  More on this in a moment.

Christ and the Canaanite Woman by Germain-Jean Drouais (1784)

During the past five weeks of my Psychiatry Clerkship, I’ve seen that we are often in a position to simply do the best for patients with the little we have.  Many of our patients suffer from life-long substance abuse, others are being monitored because of signs they might harm someone, and others are there at the request of the courts.  It’s easy to fall into a “managing patients” mode of just keeping things from getting out of hand but never really helping the patient recover from his illness.  (Especially when the patio re-modeling keeps some patients from being able to go outside for two weeks.)

One of the populations that figure prominently into “patient management” is that group diagnosed with antisocial personality disorder.  NICE has dual concerns of managing resources as well as managing antisocial patients who may cause harm to society in the form of criminal activity, for instance.  NICE working groups have to come up with guidelines for handling these patients.  For instance:

Pharmacological interventions should not be routinely used for the treatment of antisocial personality disorder or associated behaviours of aggression, anger, and impulsivity.  Pharmacological interventions for comorbid mental disorders, in particular depression and anxiety, should be in line with recommendations in the relevant NICE clinical guideline.

Psychological interventions such as Cognitive Behavioral Therapy, on the other hand, were found to be wise uses of funds in working with these patients.

It is easy to click through a patient roster quickly in order to carry out management guidelines and lose a sense of the human being who is at dis-ease because of an illness.  This is why I think Christian hospitals and places of rest for the mentally ill offer something that our modern health care systems do not: their reason for being is first the healing ministry of Jesus, seeing that the ill become whole.

For more information

Reporting from Minneapolis

 

MINNEAPOLIS (JG) – The annual conference of the American Society for Bioethics and Humanities (ASBH) is taking place here in Minneapolis. This is the big conference for the major bioethics organization in the country, and this is my first time attending.

The conference began yesterday with concurrent paper sessions, one of which was entitled “Dignity and Enhancement.” Having some acquaintance with both of these topics through my association with CBHD, I looked forward to hearing the speakers.

Four people presented papers. One discussed competing concepts of human dignity. She was willing to accept the existence of something called dignity, but couldn’t see how the concept gave any practical moral direction; the idea that “I should work to preserve another’s dignity because I want mine to be preserved” was not convincing for her. Another presenter, speaking on neuroenhancement, argued that tools are extensions of our minds; so if we’re OK with enhancing and and improving tools like, say, smartphones, which are the external machinery of our minds, then we should have no problem with taking medication like Ritalin to enhance and improve our brains, which are the internal machinery of our minds. (He kept putting up a slide that equated an iPhone with a Ritalin tablet.) In fact, it might be an affront to human dignity to prevent or limit opportunities for neuroenhancement.  Yet another presenter, addressing the question of whether or not human dignity is an essential principle of bioethics, was willing to allow that the concept of human dignity isn’t entirely useless, which I was glad to hear; but then she asserted that it is actually a way of “sneaking religious assumptions into a secular-sounding word,” and she left very little doubt regarding how she felt about sneaky religionists infiltrating an obviously secular field like bioethics. She agreed with a member of the audience who stated that the problem with dignity isn’t that it’s a sneaky religious term but that it is a manifestation of “human exceptionalism” (the belief that humans have a special status compared to animals).

I learned a lot in this 90-minute introduction to the cutting edge of contemporary bioethics. I learned how tenuous  in some quarters of the academy are the concepts that undergird respect for and protection of humans. I learned how important it is to sit back and listen and understand what those who hold opposing views actually believe (one of the presenters seemed very adept at misrepresenting views opposed to hers; we must be careful not to do the same thing). I was impressed again with the critical need for Christians and the Church to engage the culture at all levels on these topics.

As we got up to leave, a friend from CBHD who has attended these conferences before — and had previously hinted at what I could expect — leaned over and said, with a chuckle and more than a hint of irony, “Welcome to ASBH!”

An eye-opening welcome, indeed.

The Silent Partner

As I mentioned a couple of weeks ago, my wife is pregnant! This means, among other things, lots of doctor visits, name ideas, inappropriate questions from strangers and lamaze jokes (who could possibly take that seriously).

In between reprimanding me for my antics and misbehavior at the Doc’s office, my wife has been asking me about the necessity of the MANY medical options before us: Should we have that test? Are we really going to do that? Do we really have to do that?! In most cases the answer is “no”. Most of the test’s “discoveries” offer no moral solutions (more on this next week).

But it is good that she asks me these questions because most of the interactions between my wife and the doctor are completely predicated on the idea that I am not there.  I am a fly on the wall. A silent partner. So like a child not receiving attention, I find myself inserting random comments and thoughts during these appointments usually to no avail.

This whole thing concerns me. Are other expecting fathers being treated like this?

Is this why so many men have taken up a distant role in parenthood? Perhaps I have the cause and effect backwards: maybe because men traditionally have played a more distant role we have now been relegated to a quiet place in the corner. It seems no matter which of these is true, one thing has become clear to me: at times, to the detriment of a partnership in parenting, women’s rights take precedence in medical decision making during pregnancy.

 

 

Privacy and the risks of IVF

A recent article in Toronto’s National Post tells of the experience of Dr. Rosanna Weksberg, a University of Toronto geneticist, when she presented a talk on the need to study risks associated with IVF (in vitro fertilization) to the Canadian Fertility and Andrology Society. Her talk related her experience in seeing an increased number of children with rare genetic disorders among children conceived by IVF. Some of those disorders are seen as much as 10 times more often in children born by IVF.

She expressed her concern that follow-up studies of children born by IVF are needed. The reception from the meeting of fertility specialists was polite, but no interest in her proposal for study was expressed. She said she has been trying to find fertility clinics willing to partner in studies of children born with the help of reproductive technology, but has not found any willing to work with her. A spokesman for the fertility society said they were interested, but that clinics could not afford to fund research.

In the United States assisted reproduction is a 3 billion dollar a year industry, but like in Canada there is no accurate information on the risk of genetic disorders, birth defects, or other increased health risks of the children produced by these procedures. Our culture has set apart everything having to do with sexuality and reproduction in a domain protected by privacy. That protection is so complete that it causes assisted reproductive technology to be entirely unregulated and makes any attempt to study the outcomes of the children produced exceedingly difficult. We need to recognize that, even though privacy in reproductive decisions is important, people cannot make responsible decisions without good information. Those contemplating the use of assisted reproductive technology need to know what the risks are for the children they bring into the world. They owe it to their children.

Mary had a little “Mary?”

Last week the journal Nature reported that scientists in New York have created human embryo clones for the purpose of developing patient-specific stem cells. The process involves reprogramming a human egg via somatic cell nuclear transfer so that the egg becomes an early-stage human embryo. The hope is that, in the future, the patient’s own DNA will be used to produce the clone and, thus, he or she will have access to matching stem cells. Successful clones using animal eggs go back to the 1996 conception of Dolly, the cloned sheep. However, according to Nature, “When it came to humans, researchers didn’t have unfettered access to the key resource, eggs — at least not in the numbers that they needed to tweak the finicky procedure for human biology.” Of course, this “finicky procedure” entails the controversial procurement of human eggs from donors, the inevitable trial and error destruction of the newly created human embryos in order to produce a successful clone, and the eventual killing of the cloned embryo at the blastocyst stage in order to extract the desired stem cells.

For example, in the latest research, scientists obtained 270 eggs from 16 donors, in and of itself a risky procedure for the donors. The unique feature of this latest research is that researchers discovered that previous attempts at cloning failed because of the difficulty of removing DNA from the human egg. This time, they decided to leave the original DNA in the egg and simply added the donor’s DNA. This novel method resulted in the creation of an embryo with an additional set of chromosomes. The newly created embryo grew to the blastocyst stage which is, of course, the phase at which stem cells can be obtained. The problem for future research is that, with an additional set of chromosomes, the stem cells are no longer a match for the patient. Instead, we are left with an abnormal human embryo with too many chromosomes. Even so, scientists press on with their research because they doubt the success of iPSCs; cloning offers a “more natural” method of obtaining stem cells.

It seems almost comical to think that adding someone else’s DNA to an egg that already contains its own DNA is somehow a “more natural” process. Nonetheless, from my perspective, it seems that researchers are very quick to highlight the apparent problems with iPSCs, a technology that is still in its infancy, and yet downplay the obvious technical and ethical problems with hESCs.

Reflections from the Front: We All Answer to Someone

Reflections from the Front: We All Answer to Someone

“Surgeons routinely fail to disclose financial ties” is the title of a  Journal Sentinel article by John Fauber, http://www.jsonline.com/features/health/102811174.html. Fauber outlines how over the last several years a number of leading orthopedic surgeons received millions of dollars in “consultation fees”, to use and promote products from specific manufacturers. Hospitals and patients were unaware of the conflicts of interest. These types of violations are illegal under current anti-kickback laws, but nonetheless in 2007, “41 surgeons and researchers got $114 million from the five firms (limited study), an average of $2.8 million each.”

In www.neurotodayonline.com August 4, 2011, Volume 11, Issue 15, Kurt Samson details an unethical practice referred to as “seeding”. In seeding, the drug company secures high profile researchers to participate in studies which they believe legitimate.  With the new drug on the guru’s front burner, the hope is that in the course of their professional presentations they mention their new trials. The aura of “They’re using it in trials at the Cleveland Clinic” provides legitimacy by association. It works for high prescribers as well. If busy clinicians become involved in the trial, they may also begin prescribing the medication for their other patients as well. The fulcrum of the duplicity as discovered in a recent court case against Parke-Davis, was to pretend  the results of the trial were important for proof of safety or efficacy, when  these facts had already been proven. This was purely a marketing ploy.

During the early days of the stem cell controversy in America, in discussing embryonic versus adult stem cell research funding, outspoken scientists claimed that the science of the research was so complex that no non-scientist’s opinion was worth hearing on the ethical aspects of the question. The obvious conflicts of interest, who is receiving funding from whom, to what ends, were ignored. Over time the overblown claims of the embryonic researchers have been proven to be just that. I witnessed a researcher claim in a symposium in our medical school that the future of stem cell research depended primarily on embryonic experiments. Later, in private, when I questioned him, his response was, “Anyone knows that thus far the adult stem cell research has been far more productive, but I don’t want anyone telling me what I can do my research on.”

My points?  1) Follow the money, 2) Accountability, with checks and balances is important in research and education (government, religion, etc.), and 3) We are all fallen human beings. Contrary to what President Clinton said while in the White House, as humans we are not all “basically good people.” Made in the image of God, we are nonetheless fallen; power corrupts, and researchers need to be answerable not only to academia, but to society at large. These issues are too important to leave to scientists, and the church is far too important a voice to abstain from accountability discussions. We must remain attentive and involved in the forum.

 

TIU Blog 2011 Number 3

Human cloning “breakthrough?”

 

Last week, Joe Gibes commented on the BBC’s report on the scientific “breakthrough” of  Dieter Egli and his colleagues at the New York Stem Cell Laboratory. As the BBC and other news agencies presented it, Egli et al derived human embryonic stem cells through a “cloning” technique, but as Joe correctly noted, no clones were produced. In transferring the nucleus of an adult skin cell to a nucleated human egg and retaining both sets of DNA during subsequent embryonic development, the researchers had actually  created not clones but  genomic hybrids with, I would add, a generally lethal defect (triploidy).

I see nothing sinister behind the imprecise language, and I don’t think Joe does either. It is, in fact, understandable as the method employed was essentially a modification of the technique (“somatic cell nuclear transfer”) that Ian Wilmut and his colleagues at the Roslin Institute used 15 years ago to create “Dolly” the sheep, the world’s first clone of an adult mammal. The chief difference is that Wilmut et al transferred the donor nucleus to an enucleated egg.

Cloning adult mammals is, to put it gently, no piece of cake. In their ground-breaking publication that introduced Dolly to the world, Wilmut et al reported making 434 attempts to fuse a nucleated donor cell  to an enucleated egg. That effort yielded 277 (63.8%)  zygotes (“fused couplets”) which they then transferred to ligated sheep oviducts for culture. Of those 277,  247 (89.2%) were recovered and of those, only 29 (11.7%) developed to a transferable stage (morula/balstocyst). As a fraction of the original 434 eggs, that represents 6.7%. Now, 14 years after the initial report of Wilmut et al, the process of producing clones from adult mammalian cells remains highly inefficient.

The “Holy Grail” of cloning, as Joe and others have put it, is not a cute little lamb, but a human embryo. Most researchers in the field recoil at the idea of cloning to reproduce full-sized copies of ourselves, but they salivate at the prospect of creating disposable, embryonic miniatures whose genomic identity would purportedly constitute for their “parents” the key to great medical benefit. Human biology, however, has proven quite resistant  to such designs, and that, I would submit, is the “story behind the story” of Egli et al. The whole reason these researchers moved to the hybrid model was because of their inability, and that of many others before them, to produce an embryonic human clone using techniques that, albeit with great inefficiency, have proven successful in animals.[1] What the BBC and others tout as a “breakthrough” is, in fact, little more than an affirmation of the status quo in human cloning research.

Whether human biology will continue to frustrate the dogged efforts of Egli and others to produce a human clone, only time will tell. But at this stage, reality certainly mirrors fiction as the quest for the “Grail” remains exactly that – a quest. Sadly, this quest to clone ourselves exacts a great toll as it drains finite resources and, more concernedly, does great violence to human dignity with its reduction of human life to an object of mere utility.  That we would dump the quest and focus our health resources elsewhere seems a right and sensible thing to do, but I’m not banking on that happening soon as many a policy-maker and researcher are “all-in”  in the gamble on so-called “therapeutic” cloning. That researchers have already discovered a method for re-programming adult human cells to a pluripotent state that requires neither a human egg donor nor an embryonic intermediate reveals the ongoing quest to produce a human clone to be less about advancing good science and medical therapy and more about satisfying a prior agenda.


[1] Sheep (1997), Mouse (1998), Gaur (2000), Pig (2000), Mouflon Sheep (2001), Cat (2002), Cow (2002), Goat (2002), Rabbit (2002), Deer (2003), Horse (2003), Mule (2003), Rat (2003), Wildcat (2003), Dog (2005), Banteng (2005), Ferret (2006), Swamp Buffalo (2006), Gray Wolf (2007).  See the US Food and Drug Administration online publication “Technology Overview: Somatic Cell Nuclear Transfer and Other Assisted Reproductive Technologies” at http://www.fda.gov/animalveterinary/safetyhealth/animalcloning/ucm124765.htm