Losing control at Christmas

 

Throughout most of history, having children was not a matter of exerting control, but of accepting uncertainty. Whether and how the act of making love resulted in children was a mystery. In the pages of Scripture, having children — especially when one had been considered barren — was most often seen as a sign of God’s blessing: think of Eve, Sarah, Rachel and Leah, Hannah, Elizabeth …

Somewhere in the modern epoch the mindset changed. Children are still a blessing, but now they are also a liability, and we calculate how many hundreds of thousands of dollars it costs to raise a child. In the modern purview, since childbirth brings liability, it must be brought under control. The most portentous embodiment of this mindset change is the development of contraception. We now speak of “planned” and “unplanned” pregnancies — another way of saying “controlled” vs. “uncontrolled.”

But this is not enough control for moderns, for all contraception, other than abstinence, is imperfect. So when contraception fails, when we lose control, we establish the option of abortion, by which we re-assert control, by which we affirm the supreme modern value of control over life.

But even this degree of control is not enough. Why should we stop at merely preventing children, when we can control their conception? Thus we pursue reproductive technologies, by which the woman barren, like Rachel, or too-old-to-have-children, like Elizabeth, can produce a child. Yet this is still not enough; there is still too great an element of uncertainty, so we assert an ever-greater control over the process of conception by testing these children of reproductive technology before they are born or even en-wombed, in order to control who will live and who will not. Again, the mindset changes: children now are not only a blessing and a liability, but a product, manufactured to certain specifications and precise tolerances.

“Control” is not a bad thing. There are many in this world who would be much better off if they had a greater degree of control over their lives. But since we are a fallen race, the more we seize control of something, the more we ruin it in the process. We see this in our physical environment as we have increasingly asserted control over it; we will see it in our humanity if we continue in the path of controlling ourselves through enhancement and controlling our offspring through genetic manipulation.  One of the most vexing questions bioethics must answer is, How much control is right? And when have we gone too far?

Contrast the modern techno-birth with the most important birth in all of history, which was not a matter of control, but of surrender, surrendering control over birth. In the process, the “perfect” contraception — abstinence — fails! Yet from this act of surrendering comes the greatest gift the world has ever received. Is there a lesson here? Does our greatest good always lie not in grasping for greater and greater control, but in knowing when to relinquish control and surrender?

 

The state of PGD—an update from ASH

At the 53rd meeting of the American Society of Hematology (ASH), held from December 10-13 in San Diego, there was an “education spotlight” session entitled, “Preimplantation Genetics: The Science, The Medicine, The Bioethics.” The speakers were Joyce Harper, PhD, from the University College London Centre for Preimplantation Genetics and Diagnosis (PGD), and Mark Hughes, MD, PhD, from Genesis Genetics Institute in Detroit. I’m hardly a PGD expert, so I attended to hear perspectives from people who are practicing it. The session was long on science and medicine but too short on the discussion of ethics. This was a shame because the speakers clearly have ethical worries, even though they are clearly not congruent with the concerns of most TIU bioethicists. Still, I found the session thoughtful and informative.
There was far too much for a brief blog post, but here are some highlights, first on the medical/scientific side:
1) PGD can be made on a single cell (typically 1-5), taken at any of several stages of early embryonic development. Dr. Hughes showed how he takes a single cell at the blastocyst stage (5-6 days after fertilization). Results in 24 hours, with a stated diagnostic error rate of 0.7%, and an attendant 1% post-PGD risk of a genetic-recessive disease (compared with 25% by standard Mendelian genetics).
2) PGD is most commonly used by fertile couples to try to avoid a severe genetic disease after a first affected birth or known risk based on parental genetics.
3) Genetic analysis is moving toward genome-wide arrays that can read the entire genome quickly, and at ever lower cost (currently about $2500 per genome). Dr. Hughes: “The technology now has no limitations [diagnostically]…so the question is not ‘can we?’ but ‘should we?’” [diagnose].
4) Biopsied embryos generally—but not always—do well, so the success rate of the (necessary) IVF pregnancies is reduced. The number of implantations is also reduced—e.g., 12 eggs to get 10 fertilizations, 8 embryos biopsied, 7 successfully diagnosed, 5 abnormal and 2 normal, one of those two judged viable for implantation.
5) Dr. Hughes said there were 47,164 PGD babies in the US in 2010. I thought he said born in 2010 but that number sounds high for a single year. Still, it’s a lot.
6) The most prominent “savior sibling” examples are for a disease that is curable with bone marrow transplant (BMT), e.g., sickle cell anemia (SCA). The PGD baby’s umbilical cord blood (UCB) becomes the donor blood. An example is sickle cell anemia (SCA). Dr. Hughes told the story of the family of NBA player Carlos Boozer, whose first child was cured of SCA after receiving a UCB transplant after the birth of his baby brother. Dr. Hughes is working to take this approach to SCA to West Africa at low cost.
7) For a Mendelian-recessive disease, one needs an unaffected embryo that is also an HLA (immunologic) match, with the probabilities being ¾ x ¼=3/16. In other words, 16 embryos to get 3 genetically appropriate “saviors.”
As I said, the ethical discussion was compressed, and must also be here. Clearly one worries about all the other embryos created in this process—and at least one questioner at ASH raised this by mentioning the value of all people despite disease or disability. As someone who considers himself a strong pro-lifer, I do find PGD for the most severe genetic disorders a “hard case,” and I have to admit that I am reluctant to condemn the Boozers. The speakers were most concerned about how to limit the use of PGD, medically. They are clearly uncomfortable with drawing premature conclusions or taking action on the often-uninterpretable results of a genome-wide analysis. They also raised hard cases of using PGD for otherwise treatable disease (e.g., polycystic kidney, or to obtain UCB to transplant a sibling with leukemia), using PGD to get an Rh-negative baby when mom has sensitized to Rh in a prior pregnancy, or using PGD to eliminate a cancer-susceptibility gene like BRCA-1 from the family tree (Dr. Hughes would accept, but he had debated Francis Collins, who would not permit this). Bottom line: these two professionals do seem to agree that defending the “therapeutic boundary” is important. If I read that correctly, I find it at least a bit reassuring and perhaps a contact point for engagement.
Space does not permit more here. I’m happy to try to field questions or carry on discussion through comments.

Down Syndrome and Thanksgiving

 

Despite today being the retail abomination known as “Black Friday,” I will continue in the vein of Thanksgiving and write about a person I am thankful for.

My nephew’s name is Jacob, and he has Down Syndrome. He just turned 18. He is one of the most loyal and loving people I have the privilege of knowing. He gives incredible, bone-crushing hugs. His cell phone voice mail message ends with, “Love you.” His aunt, my sister, lies in a nursing home, barely able to interact since a brain injury in June; but Jacob doesn’t care about her medical conditions, he just loves to be there with her, because he loves his aunt. I am thankful for Jacob’s example of unconditional love.

When we take Jacob out to eat, he orders french fries. And when he eats french fries, he eats them a certain way, one at a time, dipped just so in his favorite condiment: steak sauce. Lunch takes at least an hour. I am thankful that Jacob makes us slow down. 

Jacob loves music. He owns several guitars, and received a bass guitar for his last birthday. He especially loves worship music. He can strum his guitars, although a guitarist probably wouldn’t call it “playing” guitar. His singing isn’t exactly on key. Yet most Sundays he is in front of his church leading worship with the worship team. His microphone may not be turned up terribly high, but his love for Christ is at full volume. I am thankful for Jacob’s example of unselfconscious worship.

Jacob sometimes requires extra patience. His parents have made extra sacrifices. There are things he does that will drive you crazy if you let them (Is there anybody for whom that is not true?). He will never live independently, and will always require a level of extra care. But the extra care and patience are richly rewarded. And while we think we are making extra sacrifices for Jacob, I sometimes think that God sees it differently: that He is giving us an extra measure of blessing by allowing us to be with Jacob. Yet it seems that too many, when they think of “Down Syndrome,” think only of the extra work and sacrifice and limitations. Either that, or they think of a life that is not worth living. Whatever the thinking, it is both sad and frightening that in this country, about 92% of the unborn babies suspected (on the basis of prenatal testing) of having Down Syndrome are aborted: sad, because of the loss of human life through abortion as well as the loss of the privilege of being with these unique people; and frightening, because of what it says about us as a society. I am thankful that Jacob was not one of the 92%.

Voting on personhood

The issue of how we define personhood or how we define who has full moral status is one of the most fundamental issues in bioethics. It determines who is included in our considerations of ethical issues. The worldview of Christians who understand the Bible to be the foundation of our understanding of God’s moral truth and who hold to the traditional creeds of the church points to a biological definition of personhood. This biological definition would include every living human being from the time he or she became a separate biologic entity as a zygote following fertilization or its equivalent. This is in contrast to those who would define personhood functionally by the presence of what are considered human attributes.
Next week the people of Louisiana will vote on an amendment to the state constitution that would add the following statement, “Person defined. As used in this Article III of the state constitution, “The term ‘person’ or ‘persons’ shall include every human being from the moment of fertilization, cloning or the functional equivalent thereof.”
For those of us with a Christian worldview the proposed amendment raises two questions. 1) Is this definition correct? We would answer that with an unequivocal yes. 2) Is it prudent to add this definition to a state constitution? The answer to that is less clear. If by adding this definition the lives of defenseless unborn human beings are spared then it is clearly a good thing. If this amendment leads to a reaction at a national level which more deeply establishes personal autonomy as the legal priority over the value of the lives of those who are unable to speak for themselves then more unborn lives may be lost than if it were not passed.
We must always be clear in expressing what we understand to be God’s moral truth. When we venture into public policy we need to understand that we are working in a fallen world where that truth may not be understood and a focus on the self may distort it. We need wisdom to decide how to proceed because what is most prudent may not be clear.

What’s in a name?

Interacting with students often reminds me of the importance of some very basic things.  Recently I was reminded of the importance of defining the terms we use in bioethics.  In reading reviews of case studies by some of my online students I saw how their unquestioning acceptance of definitions influences how they think.

The terms involved were “abortion” and “passive euthanasia” and the definitions were from a textbook by Lewis Vaughn that we use in the course.  Vaughn’s text, which I reviewed in the summer 2011 edition of Ethics & Medicine, is generally good at representing a wide spectrum of views on current issues in bioethics, but sometimes some less objective things slip in.

Abortion was defined as “the intentional termination of a pregnancy through drugs or surgery”, which sounds pretty straightforward.  From the way a student was using the definition in a case review I realized that the definition would include and equate abortion with such things as the induction of labor for the delivery of a healthy term infant or a C-section to save the life of an infant in distress.  The fact that an abortion is a termination of pregnancy that includes the intentional ending of the life of the fetus was left out.  That part of the definition makes a big difference.

Passive euthanasia was defined as “allowing someone to die by not doing something that would prolong life.”  That is how James Rachels defined passive euthanasia in his classic defense of active euthanasia that was based on there being no moral distinction between active and passive euthanasia.  What that definition leaves out is the idea that any euthanasia involves the intent to end another person’s life.  This definition of passive euthanasia includes all the times we allow a person to die by choosing not to initiate or continue any possible life-prolonging treatment, but there is a significant difference between allowing a person to die of his or her disease when treatment has become more of a burden than a benefit and doing something with the intent of causing the person to die.  Intending another person’s death is the key to what is wrong with euthanasia and leaving that out of the definition makes a big difference.

What’s in a name?  The difference between right and wrong.

Abortion Prevention

Nigel Cameron wrote that it is important to see elective abortion as a symptom, not the disease.  Because this is true, if Roe v. Wade were overturned tomorrow, and some states started to outlaw abortion, the abortion problem would not end;  because even if Roe v. Wade goes away, all of the reasons that women have abortions will still exist.  What will those of us who call ourselves Pro-Life do to address some of those underlying causes?  What are we doing to address those underlying causes?  (Do we even think about what the underlying causes are?)  What are we doing to promote a social and cultural environment that is less inimical to the raising of and providing for children?  What are we doing to help those who do choose to carry their babies to term, particularly among the poor in whom abortion is so prevalent?  What are we doing to support them in feeding and housing and providing a safe environment and medical care to their children?  (Why are Pro-Lifers so heavily represented among those who are most vocally opposed to health care reform and gun control?)

 

I hope and pray that some day Roe v. Wade is overturned.  But I believe that we as a Christian community must work more energetically to show that being Pro-Life means more than picketing and praying.  At the very least, it means making sacrifices to help women and families with children.  It means getting more involved in the messy lives of those around us.  If we can address some of the reasons so many women feel that abortion is their best or only option, maybe we can go a long way towards accomplishing what we can never accomplish merely by overturning a Supreme Court decision.

 

From Eugenics to Genocide (A Short Walk)

Last week I wrote about the practice of eugenics in modern American obstetrics:  induced abortion performed because prenatal testing shows a potential chromosomal abnormality or birth defect.  This past week, the BBC News Online ran a series of stories under the headline “India’s unwanted girls.”  These stories tell of the practice in India of induced abortion performed because prenatal testing shows a particular unwanted chromosomal “abnormality”:  the presence of the XX chromosome pair, i.e., aborting a baby simply because she is female.  Because of long-standing prejudices and practices, in many parts of Indian society a female child is considered undesirable.  There is widespread availability of prenatal ultrasound clinics for sex determination, and so many parents  avail themselves of  these clinics’ services to guide abortion decisions that in some areas of India there are less than 840 female children for every 1000 male children.  Some Indian activists use the word “genocide” to describe this selective killing of girls.  Lest anyone suspect that Indian families thought up this novel use of medical technology on their own, the following quote from the story provides chilling evidence to the contrary:  “In 1974, Delhi’s prestigious All India Institute of Medical Sciences came out with a study which said sex-determination tests were a boon for Indian women.  It said they no longer needed to produce endless children to have the right number of sons, and it encouraged the determination and elimination of female foetuses as an effective tool of population control.”

Three observations:  First, given the rationalizations for the unfettered right to abortion that pro-choice advocates have promulgated in this country, they would be have to be mute in the face of sex-selective abortion.  They cannot say that it is wrong to abort girls, because if it is wrong to abort girls, then it is wrong to abort boys.  If they admit that it is wrong to distinguish — and extinguish — foetuses on the basis of an arbitrary criterion such as gender, then they would have to admit that it is wrong to do so on the basis of any arbitrary criterion — such as the presence of a disability.

Second, the term “genocide” used by certain Indian activists seems extreme, but it may not be such a long walk from eugenics to genocide.  The justification used to commit foeticide on the basis of gender can be employed to commit foeticide, say, on the basis of  a genetic predisposition to obesity (A 1993 March of Dimes poll found that 11% of parents said they would abort a  fetus whose genome was predisposed to obesity), and is not far from the justification used to commit murder on the basis of whether one belongs to the Hutu or Tutsi tribe.

Third, this tragic story shows yet again what happens when medicine abandons its Hippocratic ethos of commitment to the patient and instead uses its considerable power to pursue goals such as “population control,” social stability — or eugenics.

 

How Important Are Those with Moral Status to Us?

I have a friend who is from Africa.  She sees a lot of things in this country from a different perspective that makes me think, and sometimes makes me uncomfortable.  We were recently in a discussion in a group at church about how we define who has moral status and how that impacts our moral decisions about human embryos and fetuses.  After the discussion she said she had noted that many Christians in America were quite passionate about the value of the life of those who were unborn, but didn’t seem to care as much about those who were born.  She said we stand up for the value of the lives of the unborn whom we will never know and who do not put any demands on us, but seem to neglect the value of the lives of those around us who are in need because valuing their lives would put demands on us.

I think my friend is right.  If we really believe that all human beings have full moral status we need to help people see the moral problems with abortion, destructive research on embryos, and the making and discarding of excess embryos in IVF, but we need to do much more.  We need to affirm the moral worth of those who have been born.  We need to care for widows, orphans, the poor, and those who are oppressed.  We can see God’s heart for them in the prophets and in Jesus.  There are many Christians who reach out to those in need and love them in tangible ways that express their understanding of their value as human beings.  More of us need to do that.  I need to do that more.