Pray Tell, What Does Harvey have to do with Abortion?

Nothing brings out the true color of people as clearly as a national catastrophe such as hurricane Harvey. “Beautiful” has been the color of the vast majority of people who have been victims of, or responders to, one of the worst natural disasters in U.S. history. Many people who watched their houses and possessions float away, who must have wondered how they will ever recover from their losses, nevertheless are painting the beautiful colors of faith, trust, courage, and patience. Many people who have put their own jobs and lives on hold to go down to Houston to help strangers in need, to pluck them out of the flood waters, to feed and shelter them, and to give them the proverbial shirt off their backs, are painting the beautiful colors of love, service, and sacrifice toward fellow human beings in need. Yes, Harvey has brought out many beautiful colors, as the vast majority of people have displayed the best of what human beings are capable of.

However, tragedies also bring out the true “ugly” colors of other people. Looters have broken into business and private dwellings and have wantonly stolen what did not belong to them. On some occasions, first responders have been robbed and even shot at. And when the flood waters recede and flood victims begin to rebuild their homes and lives, be assured that scammers will make the rounds, taking advantage of people in great need to pad their own greedy pockets with ill-gotten gain. Yes, Harvey has brought out many ugly colors, as a few people have displayed the worst of what human beings are capable of.

In my judgment, hurricane Harvey has brought out the true colors of the ardently pro-choice organization, NARAL. Ugly and unconscionable are the kindest words I have for the tweets NARAL posted to its official twitter account. “In the wake of #HurricaneHarvey, Texans seeking abortion face clinic closures, canceled appts, & displacement.” NARAL also encouraged people to give money to the Lilith Fund which invited people to “join us in supporting Harvey survivors seeking an abortion but cannot afford it.”

Nothing like using a human tragedy for a desperate fund-raising appeal! After all, could there be anything worse than a slow-down in the abortion industry? Thousands of displaced people living in shelters, wondering how they’ll recover since they are without flood insurance to rebuild their houses. Thousands of people simply happy that they are alive, having been rescued from Harvey’s rage. Thousands of people emptying their wallets and giving generously to the Red Cross and other disaster relief organizations. And NARAL is worried it might not get its share of money to support the abortion juggernaut? In the midst of all the suffering inflicted by Harvey, evidently NARAL’s deepest fear is that some human fetuses might escape the death of abortion, having been “accidently saved” because the abortion-machine was unable to operate at full capacity in Texas during those terrible days that were hurricane Harvey. NARAL’s true color is evident. It is not so much “pro-choice” as it is “pro-abortion,” and it is not above taking advantage of a human tragedy to beg money to support its deathly cause.

Fetal tissue and commerce

You may have seen in the general press that Indiana University is asking a federal judge to declare unconstitutional that state’s law banning research on the remains of aborted fetuses.  I noticed an article in the Wall Street Journal (subscription required).  An open-access account can be found here.

I oppose abortion, but I can imagine for the sake of argument that, if one allows for abortion, that it might be claimed that the tissue of an aborted unborn human could ethically be donated for research.  It seems to me that such an argument would construe this donation to be similar to donation of organs for transplantation.  In this case, the mother would be speaking for her (newly-deceased) unborn to make the decision, since the aborted one would not have decision-making capacity.

For such an action to be remotely ethical, donation of tissue could not in any way influence the decision to have an abortion–as, indeed, federal restrictions on fetal tissue research currently require.  There should be no profit to the donor or the abortion provider in the process.  In light of the Planned Parenthood brouhaha over this subject, I might suggest that the researchers seeking the tissue for research be required to bear any costs for the preparation of the tissue.  And something like the dead donor rule for organ transplantation would have to apply.  But that’s probably a trivial point in this case.  Never mind that the dead donor rule itself is under attack these days.

I imagine it’s clear that I don’t find this argument very persuasive.  For one, in organ donation, assuming the dead donor rule applies, one is not killing the donor on purpose, as is the case in abortion.  (Then again, maybe I speak too soon.  Maybe as euthanasia advances we will see it practiced explicitly to facilitate organ harvesting.  But I don’t want to believe that will get much traction.)

For another, scientists should seek alternate approaches to their research.  If we afforded unborn humans the same protections generally afforded to human research subjects, seeking such alternatives would be unescapable.  But in a time when it is far from agreed that we should not create human embryos solely for the purpose of medical research, extending protections to cover the new being in a pregnancy would appear a stretch for us.

Whatever the law allows, it is hard to square respect for human life with performing research on electively aborted babies, no matter how “important” the research appears.

The WSJ report says that other parts of Indiana’s law have been blocked in court, including a ban on abortions because prenatal diagnosis has detected Down syndrome–part of my subject last week.

Two other points about this case that I find painfully telling about how our society reflexively thinks of human life.  First: Indiana University’s key argument against the Indiana law is that it blocks commerce, it violates the commerce clause of the Constitution.  The argument is that aborted fetal tissue is an “article of commerce,” similar to–and these are the precedents being cited– margarine, or meat slaughtered more than 100 miles from the point of sale.

Second:  the university contends that the law does not advance a legitimate public interest.  All it does is express “moral disdain for abortion.”  So: the protection of unborn human life is not a legitimate public interest.  What other human life lies outside the public interest, I wonder?

Hmmm….

 

Search and destroy—or at least, select

This week’s issue of Nature carries a feature article on the explosion of preimplantation genetic diagnosis (PGD) in China.  Because women are having children later in life, partly because of relaxation of the old one-child policy; because Chinese culture sees it as a duty to seek to bear healthy children; because some Chinese want to try to enable their kids to exploit some features of life–reproductive technology, specifically in vitro fertilization, is exploding, and embryos are selected for the absence of certain diseases.  Embryos with genes that transmit such diseases have oblivion as their fate, but the Chinese hope that all children born there are born are free of the burdens of some truly bad diseases, and if they have those diseases, they won’t be born.  Retinoblastoma.  Huntington’s disease.  Brittle-bone disease (osteogenesis imperfecta).  (That’s the disease that Alec, the kid on the Shreiners Hospital for Children ads, has–you know, “we’ll send you this adowable wuv-to the wescue bwanket.”  I love those ads.) Polycystic kidneyShort-rib polydactyly syndrome.

Deafness.  Maybe the Chinese think that deaf people have no reason to live, kind of like Randy Newman’s short people.

The Asian gene that makes it hard to metabolize alcohol.  Without that gene, it’s possible to drink at a business lunch.  Important for career success.

The central government’s 5-year plan puts a high priority on using PGD to optimize the population.  Not too many people object.

Folks in the West wonder why the US can’t get with the program the way the Chinese do.

Chinese physician-scientists speak of eliminating all 6000 known disease-causing genes from the population.  “We just do them one-by-one until we get the whole set,” one Chinese geneticist is quoted as saying.

The article says further: “The Chinese word for eugenics, yousheng, is used explicitly as a positive in almost all conversations about PGD. Yousheng is about giving birth to children of better quality.”

The Chinese are also busily aborting babies with Down syndrome.  In this case, of course, Down syndrome is identified by prenatal diagnosis, when not only fertilization has occurred, but there is a pregnancy.  As in Iceland, as CBS recently reported.  If you abort such a baby in China, “nobody scolds you,” they say.  In Iceland, they “don’t look at abortion as murder.”  They “look at it as a thing that we ended.”  There are one or two Down syndrome births per year in Iceland, CBS reports  Abortion after 16 weeks is legal there for a “fetal deformity,” like Down syndrome.  The abortion rate in Iceland after a prenatal Down syndrome diagnosis is “nearly 100 percent,” compared with an estimated 67 percent in the US, 77 percent in France, and 98 percent in Denmark, according to CBS.  I didn’t see a rate for China in the Nature article.  But they sold over a million Down syndrome diagnosis kits last year, it says.

Follow the links and read both articles in full.

And go back and read Mark McQuain’s fine post of this past Tuesday, August 15, and the Time magazine article to which he linked.  The most telling statement of that article, in my opinion: “I worry that in our haste to make people healthy, we are in fact making the people we want.”

Precisely.  Beyond the concern of killing unborn humans lies the conceit that we know what people we want.  That those choices will always appear benign, or praiseworthy.  That we don’t have to worry about being told what people we want.  That the group of people doing the choosing won’t be very narrow indeed.

Perhaps it is time to start a society of free-range humans.

 

Voltaire and Alternative Definitions

“If you wish to converse with me,” said Voltaire, “define your terms.” How many a debate would have been deflated into a paragraph if the disputants had dared to define their terms! This is the alpha and omega of logic, the heart and soul of it, that every important term in serious discourse shall be subjected to strictest scrutiny and definition. It is difficult, and ruthlessly tests the mind; but once done it is half of any task. (Will Durant, The Story of Philosophy, New York, Garden City Publishing Co., Inc., 1926, page 67)

My reach for Voltaire was caused by a June 14, 2017 Perspective in the New England Journal of Medicine by R. Alta Charo, JD, Professor of Law and Bioethics at the University of Wisconsin Law School. In the article, she is concerned that many new executive branch appointees are purveyors of alternative science, “rife with alternative definitions of well-understood medical conditions and characterized by rejection of the scientific method as the standard for generating and evaluating the evidence.” For the remainder of the blog, I wish to focus on the latter half of her article regarding pregnancy, contraception, and abortion (and abortifacients). I will make the case that Professor Charo is wounded by her own sword.

Her concern is that those physicians, nurses and pharmacists claiming “conscious clause” refusals to “prescribe or provide hormonal contraceptives, emergency contraceptives, and IUDs because they oppose abortion” are wrong because, according to her, none of these can cause an abortion. Per Charo, a pregnancy is defined as the time from implantation of the zygote in the uterus until birth. Abortion is the termination of a pregnancy. Therefore, the term “abortion” can only be used to discuss the time from zygote implantation until birth, and, though conceding that IUDs “can also prevent implantation”, states these methods “do not interrupt pregnancy, and a drug or device that prevents fertilization or implantation is a contraceptive, not an abortifacient.”

There are several problems with her choice of definitions and her consistency of definition within the article itself. Pregnancy can be defined in several ways. Most healthcare providers still use the last menstrual period (LMP) to begin the count for the determination of gestation age. In Vitro Fertilization (IVF) and Assisted Reproduction Technologies (ART) can obviously pinpoint the exact timing of fertilization, thus providing an accurate fertilization age; gestational age is then calculated as fertilization age + 14 days. Lastly, pregnancy can be defined beginning at the time of implantation of the zygote to the lining of the uterus, roughly 7-10 days after fertilization. Under this definition, according to trusty Wikipedia, “during the time between conception and implantation, the future fetus exists, but the woman is not considered pregnant.” It is this last definition that Professor Charo clings to in her argument in the latter half of her article. The problem is that she relies upon the first definition only two paragraphs earlier in arguing: “the fetus does not have the physiological (let alone the psychological) capacity to experience pain until at least 24 weeks gestation (as properly estimated from last menses).”(emphasis mine)

The problem in this particular case is what do we believe to be the moral status of the zygote between conception until implantation (during the time frame outlined in this diagram)? Professor Charo is not ignorant of this time period as she parenthetically comments: “Roughly half of all blastocysts naturally fail to implant, but getting one’s menstrual period is not having a miscarriage.” Fine, but is it something else entirely to intentionally, knowingly cause the blastocyst to unnaturally fail to implant? Does she have a definition for that?

The mechanism by which levonorgestrel (LNG, the active ingredient in Plan B) is successful when used as an emergency contraceptive (“morning after pill”) is that it prevents ovulation (release of a potentially fertilizable egg), though it was originally thought to also prevent implantation. Professor Charo cited a 2001 study that observed no change in the endometrium of surgically sterilized women who took LNG. A summary of more recent studies has continued to argue that implantation is likely not effected by LNG, but summarized that “it is not scientifically possible to definitively rule out [that mechanism]”. From the same summary paper regarding IUDs: its “very high effectiveness implies that emergency insertion of a copper IUD must be able to prevent pregnancy after fertilization” (that is before implantation).

The union of a human egg and a human sperm, whether in utero or in vitro, results in a unique new human being. That is a scientific fact regardless of one’s definition of pregnancy. As such, I believe this new human being deserves the same moral safeguards as anyone reading this blog. The fact that this unique human being does not implant in the womb for up to 9 days post conception ought not alter these moral protections. In castigating physicians, nurses and pharmacists who raise moral objections to the intentional termination of the life of any human being prior to implantation by accusing them of using “alternative definitions of well-understood medical conditions”, I believe Professor Charo is guilty of the same crime. Her definitions do nothing to improve the environment for an open and honest discussion of the moral question at hand, namely: Is it right to intentionally terminate the life of a human being after fertilization but before implantation?

Tom Garigan covered this general topic very nicely in a previous post on this blog back in September 2015, which I encourage you to (re)read. He offered a similar soft nod to Voltaire in his title.

Also, extrapolating from the definition in Wikipedia, any “future fetus” is a “right now” human being. And “right now” is the time to start defining our terms more clearly so we can have the type of conversation that Voltaire had in mind.

Educating the church about how to think about bioethics

Janie Valentine’s post on Monday about a Christian health sharing ministry considering the surgical treatment of ectopic pregnancy to be the moral equivalent of abortion points out a major concern related to the church and bioethics. This is particularly a concern regarding the evangelical Protestant church and bioethics. With its hierarchical structure the Roman Catholic Church has a way of connecting the well considered thoughts about bioethical issues that are expressed by Roman Catholic ethicists with the ministries of the church. Protestant churches, and evangelical Protestant churches in particular, have a significant disconnect between those who think deeply about and write about bioethical issues and those who are doing ministry.

The issue of whether to cover the costs of surgical treatment of ectopic pregnancy illustrates the need for people within the church to learn how to think about bioethics and other ethical issues. It is not that we need to have some established evangelical set of ethical positions on issues, but rather an understanding by people in the church of how to properly analyze and think about an ethical issue. Over centuries of thought Christian scholars have recognized the principle of double effect as a good way of analyzing moral dilemmas in which doing something that is good, such as saving the life of a woman with an ectopic pregnancy results in the unwanted bad affect of the death of an embryo. It is clear that we should not focus solely on consequences and do things that are wrong even to save a person’s life, but it is reasonable at times to do good things that have unintended but foreseeable bad effects. There is a way of thinking about ethical issues that has been well established by Christian ethicists over the years which many in the church are not at all familiar with. That is a problem.

The question is how those of us who understand how to think well from a Christian perspective about moral and ethical issues can communicate that to the church in general. Over the past eight years I have been trying to do that by teaching at a Christian university. My thought has been that if we teach students who will be the future leaders of their churches how to think well about ethics they will help their churches think well about those things. However, what I have learned is that only a small minority of the students at what I consider to be an excellent Christian university actually get enough education in ethics to be able to do that. Somehow we need to convince the church that learning how to think well about moral and ethical concerns from a distinctly Christian way of thinking is important for the life and health of the church and methods to accomplish that need to be established.

Samaritan Ministries and Ectopic Pregnancies

As I was reading Laura Turner’s Buzzfeed essay about Christian health sharing ministries this past week, I was startled to discover that Samaritan Ministries, the insurance alternative my husband uses, does not cover expenses related to ectopic pregnancies.

In Section VIII of the Samaritan Ministries Guidelines, “Needs Shared by Members,” Ectopic Pregnancies is listed as the ninth item under “Miscellaneous Items Not Shared.” The guidelines state:

“Expenses related to the termination of the life of an unborn child are not publishable. The removal of a living unborn child from the mother which results in the death of the child is a ‘termination of the life of the child’ unless the removal was one for the primary purpose of saving the life of the child, or improving the health of the child. This means that the removal from the mother of an unborn child due to an ectopic pregnancy (outside the normal location in the uterus) is not publishable unless the member states they believed the child was not alive before the procedure. Considerations of the health or life of the mother does not change that the removal of a living unborn child from the mother may be a termination of life.”[1]

Ectopic pregnancy occurs when a fertilized egg implants outside of the uterus, most commonly in one of the fallopian tubes.[2]  The condition can be highly dangerous to the mother, who is at risk of internal rupturing and blood loss.[3]  While there are different classifications of ectopic pregnancies and a few different methods of treatment, Turner approximates the cost of surgery to save the life of the mother to be around $15,000.[4]

The cost of such a surgery would not be covered by Samaritan because the treatment would be “related to the termination of the life of an unborn child.” However, the consensus of Christian bioethics is that, at the very least, treatment of ectopic pregnancy by the removal of the fallopian tube is a permissible application of the doctrine of double effect. The surgeon would remove the affected fallopian tube with the intent to save the life of the mother, and foresee but not intend the death of the child.[5]

Or, as Catholic bioethicist Fr. Tadeusz Pacholczyk explains,

When an ectopic pregnancy does not resolve by itself, a morally acceptable approach would involve removal of the whole section of the tube on the side of the woman’s body where the unborn child is lodged. Although this results in reduced fertility for the woman, the section of tube around the growing child has clearly become pathological, and constitutes a mounting threat with time. This threat is addressed by removal of the tube, with the secondary, and unintended, effect that the child within will then die.

In this situation, the intention of the surgeon is directed towards the good effect (removing the damaged tissue to save the mother’s life) while only tolerating the bad effect (death of the ectopic child). Importantly, the surgeon is choosing to act on the tube (a part of the mother’s body) rather than directly on the child. Additionally, the child’s death is not the means via which the cure occurs. If a large tumor, instead of a baby, were present in the tube, the same curative procedure would be employed. It is tubal removal, not the subsequent death of the baby, that is curative for the mother’s condition.[6]

Samaritan’s stated reasoning behind its policy on ectopic pregnancies falls outside of the general consensus of Christian bioethics on this topic.  While there are treatment options for ectopic pregnancies that many Christians would consider unethical, the policy would benefit from added specificity that allowed for at least the most widely accepted treatment to be publishable.

[1] https://samaritanministries.org/help/guidelines?q=ectopic

[2] http://www.mayoclinic.org/diseases-conditions/ectopic-pregnancy/basics/definition/con-20024262

[3] http://www.mayoclinic.org/diseases-conditions/ectopic-pregnancy/basics/complications/con-20024262

[4] https://www.buzzfeed.com/lauraturner/christian-health-care?utm_term=.kq0Vwv76PL#.kxe4E8e37P

[5] https://plato.stanford.edu/entries/double-effect/

[6] http://www.catholiceducation.org/en/science/ethical-issues/when-pregnancy-goes-awry-ectopic-pregnancies.html

Most pressing bioethics issue

In yesterday’s post Mark McQuain asked the readers of this blog what they consider to be the most pressing bioethics issue in the context of a call for our president to establish a bioethics council. He referred to my recent post on reproductive ethics and the manufacturing of children. I think that is important. I also think that abortion including the aborting of children with developmental abnormalities such as Down syndrome, euthanasia, and the treatment of children with gender dysphoria are very important. However, my most pressing concern related to bioethics in our society is freedom of conscience.

It is important that we express clearly the value of human life and how that impacts how we understand the ethics of things such as reproductive technology, abortion and euthanasia, but we are living in a time in which many do not listen to reasoned arguments about what is right. Much of our society believes that what is right is determined by how they feel and they desire to be free of any limits on what they can do. They also believe, somewhat contradictorily, that they should be affirmed in being able to do what they desire by having society help them do it; even if that means that others need to do things that they believe to be wrong. Our society is losing the concept of any objective moral values. Without objective moral values it does not make sense for someone to refuse another person’s request for help in fulfilling their desires based on conscience, particularly conscience informed by an objective understanding of right and wrong. If there is no objective standard on which to refuse such a request the refusal must involve some sort of personal rejection of the one making the request.

Thus we have ACOG saying their members must affirm patients who desire an abortion. Canadian physicians may soon be required to affirm their patients’ desire for euthanasia. There is a push for physicians, psychologists and others to be required to affirm the desire for a confused child to be identified as having a gender that is in conflict with the child’s biological sex. As Cheyn Onarecker has discussed in his posts yesterday and last week, there are some prominent ethicists who give reasoned, although faulty, arguments against rights of consciences for physicians.

The elimination of rights of conscience threatens the ability of not only Christian physicians but all people of strong moral conviction in all professions to practice their professions without violating their consciences. If allowed to go unchecked the demand to affirm every request by every person in the name of pluralism and personal liberty will leave every profession in our society without those who are most conscientious. It will also lead to the demise of ethics as a disciple. If our society really believes that there are no objective moral truths and everyone should be free to pursue his or her desires and enlist others in that pursuit, then any statement that an action is wrong will not be seen as a particular understanding of what is right and wrong which can be civilly discussed, but as an unfounded personal attack on someone who desires to do that action. Thus there will be reason to shut down all ethical discussion and the discipline of ethics will be forbidden.

In Defense of a Physician’s Right of Conscientious Objection

Guest post by Cheyn Onarecker, MD

In their recent “Sounding Board” piece in the New England Journal of Medicine (subscription required), Ronit Stahl, PhD, and Ezekiel Emanuel, MD, PhD, denounce the rights of physicians and other health care professionals to opt out of certain procedures because of a moral or religious belief. The interests and rights of the patient, they state, should always trump those of the clinician. The only role for conscientious objection, in their view, is a limited one, when the appropriateness of a treatment or procedure is being debated.

Once a professional society determines that a treatment is acceptable, the physician must comply or get out of medicine altogether. Stahl and Ezekiel lament that the American Medical Association (AMA) and other medical societies support conscience rights, but, I believe the arguments they advance to eliminate such rights are not convincing and would jeopardize the future of medicine.

First, although the well-being of patients is one of the primary goals of medicine, there has always been a balance between the needs of patients and physicians. Otherwise, physicians would work 24 hours a day, with no time off for family, friends, or other pursuits. Physicians would be expected to respond to all patient requests, day or night. The question is not whether physicians should put patients’ needs above their own, but where the line should be drawn between the needs of the patient and the physician. In emergencies, a patient’s needs triumph, but other situations are not always so clear. When it comes to requests for treatments that violate a physician’s deepest moral convictions, no physician should be forced to cross over the line.

Second, the decisions by medical societies regarding the appropriateness of certain treatments and procedures do not occur in the idealized manner described by the authors. Anyone who has sat in a hospital department meeting knows how decisions are often made. The person, or persons, with the loudest voices and the most influence can carry the day. I have experienced the wholesale politicking that occurs at national society meetings, where resolutions that have been defeated for years are suddenly adopted as organizational policy because, finally, enough delegates were cajoled into a “yes” vote. And to say, as Stahl and Emanuel do, that medical debates are not affected by cultural and political factors is to ignore history. Physician-assisted suicide (PAS) did not become a legal medical practice in Oregon because the AMA determined that it should be so. In fact, the AMA, the largest physician organization in the country, opposed the practice. No, PAS became legal, because the state legislature passed a law. Likewise, abortion became legal due to the decisions of nine judges.

Given that professional societies can be influenced by shifting social and political trends, we should accommodate the right of a physician to rely on her conscience to decide on controversial practices. For example, the fact that abortion-on-demand is legal does not erase the truth that half of the population and a large percentage of physicians do not support the practice. Physicians who object to elective abortions are considering the well-being of the baby as well as the mother. A 51 percent vote by the members of their professional society will not change their conviction that an abortion would take the life of an innocent human being without just cause. Female genital mutilation (circumcision) is accepted in some parts of the world. If such a practice were to become legal and accepted by some professional society in this country, would those who object to the procedure remain silent and comply? In the milieu of the diversity of moral perspectives in our culture, a physician must sometimes rely on her conscience as a guide to ethical medical practice. I have several more thoughts on this topic that I will continue tomorrow in my next post.

Mailbag

Brief comments on four short articles from this week, on disparate topics:

James Capretta of the American Enterprise Institute (meaning he is politically right of center) pleads in the Journal of the American Medical Association (JAMA) for compromise between Republicans and Democrats on further healthcare policy reform.  Arguing that the House-passed American Health Care Act (AHCA) may never pass, he believes that a better result politically and for public policy would be if legislators could, in essence, split the difference between the AHCA and current law, the Affordable Care Act (ACA, aka “Obamacare”) on some points where he sees some agreements in principle.  He proposes: 1) a hybrid approach between the ACA’s income-based tax credits for health insurance purchase and the AHCA’s age-based approach; 2) ensuring continuous insurance coverage for people with pre-existing conditions by modifying the ACA’s penalties for not being insured to fall more heavily on higher-income people; 3) setting limits on the favorable tax treatment of employer-paid health insurance premiums; 4) automatically enrolling uninsured people into a bare-bones, no-premium plan from which they could opt out in favor of re-enrollment in a different plan (a proposal that sounds to me a lot like the Democrats’ “public option” with a guaranteed fight over scope of coverage); and 5) limiting Medicaid expansion to tie it to reform of the program (something that sounds to me a lot like what I understand is currently in the AHCA).  Mr. Capretta knows a lot more about health policy than I, and has been at it a lot longer.  His ideas seem reasonable.  But he admits that bipartisan compromise “may be wishful thinking,” and I must confess that my reaction to his article is, “when pigs fly.”

The editors of Nature smile on Pope Francis’s meeting with Huntington’s disease researchers and patients.  Many of the latter group, they note, are poor Venezuelan (who there is not poor—and oppressed—these days?) Catholics who greatly aided research with tissue donations “with little tangible reward.”  The editors further cite the Pope’s encyclical Laudato si, with its acceptance of the existence of anthropogenic climate change, as a hopeful sign that the Catholic Church will one day use its considerable influence to compromise on “sensitive issues” such as sanctity of human life from conception, and embryo selection.  Still, “there is a chasm between religion and science that cannot be bridged.  For all its apparent science-friendliness, Laudato si sticks to the traditional Vatican philosophy that the scientific method cannot deliver the full truth about the world.”  The editors call for “fresh dialogue” between science and religion—by which they mean capitulation of the latter to the flawed-on-its-face epistemology of the naturalist.  I’m not buying.

Another provocative piece in JAMA tackles ethical concerns about drug company marketing of treatments for rare diseases.  The specific concern is “disease awareness” campaigns.  The authors cite a collaboration between Incyte, the manufacturer of the only FDA-approved treatment for a rare disease (there are older, “grandfathered,” treatments of modest effectiveness), and the producers of the soap opera General Hospital, in which a character has said rare disease and (not quite like Huey Lewis) wants a new drug.  The authors ask:  Is disease awareness marketing in disguise?  Do disease awareness campaigns promote sales of specific drugs?  Does awareness of rare diseases really help, when, unlike common diseases, more aware people can get effective treatment at an earlier point in the disease history, but with rare diseases, they might only be overdiagnosed, overtested, and overtreated.  Hmmm.  The authors allow that the courts have protected direct-to-consumer drug advertising as free speech, but assert a duty of the medical profession to ensure that information to the public is not only true in a narrow sense but also not misleading.  They conclude with a bit of an overreach: “[D]irect-to-consumer advertising is a massive medical intervention with unproven public health benefit, dubious plausibility, and suggestive evidence of harm.”  The suggestion is that “disease awareness” campaigns ought to be regulated by the FDA.  I have to say I’d find it amusing, to say the least, for the FDA to be regulating soap operas—a candidate for Mad magazine’s “Scenes We’d Like to See.”

Wesley Smith blogs that Ontario is moving toward creating mandatory policies regarding assisted suicide that have the strong possibility, if not likelihood or certainty, that doctors will be required to help provide aid in dying or refer “in good faith” to other doctors who will—essentially steamrolling any conscience exemptions.  He sees in this a deliberate, tyrannical program to destroy the soul of medicine, extinguish thoughts of the sanctity of life, and cleanse the medical profession of religious or Hippocratic practitioners.  So do I.  Follow the link and read his post.

All We Need is (Unconditional) Love

On March 24, 2017, Joe Gibes posted an entry on this blog, entitled “A ‘disabled’ person speaks out against a particular form of discrimination.”[1] That post featured links to several stories about Kathleen Humberstone, a young woman with Down Syndrome who spoke at a recent UN event commemorating World Down Syndrome Day, which was observed on March 21.

After reading through Joe’s post and the stories to which his post links, I’d like to add the following two very basic observations (which I will only state here – further elaboration shall have to await another time):

  • OBSERVATION #1: Thankfulness and disability are entirely compatible – indeed, one can be genuinely thankful for one’s disability. “Thank you Down’s syndrome!” Kathleen says enthusiastically, in her prepared remarks for the UN event.[2] It’s hard to imagine she doesn’t mean this sincerely.
  • OBSERVATION #2: As Hans S. Reinders has said repeatedly,[3] often the thing that people with profound intellectual disabilities need most is simply to be chosen as friends. This point is easily generalizable to persons with any kind of disability—very often, what we “need” most is simply friendship, not “healing” or “relief” or “freedom” from the (supposed) “burden” of disability itself.

With continued developments in prenatal genetic testing techniques, including the relatively recent advent of non-invasive prenatal testing (NIPT), it has become even easier to detect, at earlier and earlier points in pregnancy, the presence of disabilities such as Down syndrome. And this, of course, opens the door to so-called “selective termination” of unborn children who test “positive” for such conditions.

For Denise Humberstone, Kathleen’s mom, this makes no sense whatsoever. Why shouldn’t we accept all persons, Denise wonders, including those with Down syndrome and other disabling conditions, with the same kind of unconditional love that we would offer to any other, nondisabled person?

“Whatever happened to unconditional love?” she asks. “When did society decide we should want and love a child only if it is as perfect as medical research allows?”

In a Facebook post[4] written just prior to Kathleen’s speech at the UN event, Denise addresses the “unrealistic demands for perfection” that appear to drive so many of these decisions to abort unborn children diagnosed with Down syndrome and other disabilities:

I’m also wondering if in parallel to scientific research, these unrealistic demands for perfection stem from the fact that we are also now living in a world where we can not only get anything we want off the internet but that item always comes with a return form should it not be up to your expectations. Not perfect? Bam! Return it, free-post, no questions asked, item will be replaced in no time….

What are we teaching our children? People are worthy of life and love only if they are perfect? We can’t cope with children unless they’re perfect? Your marriage/partnership won’t last unless your children are perfect? Siblings will be ok as long as they are all perfect? I can assure you that my friends are not happier because they don’t have a child with special needs…. There is always something to be unhappy about, it’s human nature.

So why can’t we just go back to the basics and try and love unconditionally? Why can’t we just deal with the hand we’ve been dealt… and rise up to the challenges that life throws at us?

Around the same time as Joe posted his blog entry about Kathleen Humberstone, quadriplegic and disability advocate Joni Eareckson Tada posted a blog entry[5] about World Down Syndrome Day. Here’s what she wrote:

I love smiling children… the image imparts such hope and joy, reminding us we are all made in the image of God. I especially delight in the smile of a child with Down syndrome. Anyone who has rubbed shoulders with someone who has Down syndrome will rave about the love, openness, and zest for life they bring to every family. Their laughter and joy is infectious. Today, as we celebrate World Down Syndrome Day, I’m reminded of a touching video I saw two years ago – titled “Dear Future Mom,” it shows children and teens with Down syndrome. Each has something brief and sweet to say about their disability. Then, they look into the camera and address the worries of any pregnant woman who is fearful about carrying a child with Down syndrome.

This video blessed me so much, I just had to share it with you. Perhaps you know of an expectant mother who has learned her baby has a genetic disorder. Please share this with her – the smiles on the faces of these young people will ease fears and give hope, helping her welcome her precious baby into the world.[6]

In the end, Kathleen Humberstone and the children and teens featured in “Dear Future Mom” remind us of what we all need the most: unconditional love.

 

[1] See http://blogs.tiu.edu/bioethics/2017/03/24/a-disabled-person-speaks-out-against-a-particular-form-of-discrimination/.

[2] http://www.bbc.co.uk/newsbeat/article/39339338/downs-syndrome-teenager-addresses-the-un-in-geneva

[3] See, for example, his Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics (Grand Rapids, MI: Eerdmans, 2008).

[4] https://www.facebook.com/denise.humberstone/posts/10155948159319126?comment_id=10155950465429126&reply_comment_id=10155950568324126&notif_t=feed_comment_reply&notif_id=1488705525554890

[5] http://www.joniandfriends.org/blog/world-down-syndrome-day-2017/

[6] “Dear Future Mom” can be viewed here: https://youtu.be/Ju-q4OnBtNU.