Happy New Year!

As I sit to write this blog, 2016 is nearing its end. It seems like many people are quite happy about this prospect. I must admit, the year became rather wearying at points with all of its ups and downs.

I took a few moments to reflect upon my blogs from the past year. Zika, physician-assisted death, and pharmaceutical prices were some of things I blogged about in 2016. Undoubtedly, each of those, along with many others, will continue to be issues in 2017.

At the beginning of 2017, with all of the things that are rapidly changing around us, there is one thing that remains constant: the intrinsic value of a human life. As we approach 2017, let us remember that this value is not an economic number, based on an individual’s contribution to the national GDP. Neither is the value of a human life based on intellectual ability, tied to a person’s IQ. Too often, humanity’s measurements of a person’s value—physical strength, intelligence, or buying power—all miss the point. Those from a Judeo-Christian perspective understand that each and every human is made in the image of God; therefore, each deserves to be treated with honor and dignity. Bioethics is at its best when it recognizes this unchangeable reality.

Have a great 2017!

Implications of the incarnation

As I systematically read through the Bible, but at a much slower pace than those who read through the Bible in a year, my reading of Scripture is frequently out of sync with the seasons of the church calendar. This Advent I have been reading through the last chapters of the gospel of Luke which include Jesus trying to get his followers to understand that he is going to Jerusalem to die and then be resurrected, his final days of ministry in Jerusalem, his death, and his resurrection. In my reading I have been struck by how much Jesus’s physical nature plays a part in what the gospel writers are saying. His sacrifice for the sin of all humanity is a very physical one with beatings, a cruel means of execution, and very literal physical death. Luke also makes it very clear that Jesus’s resurrection is also quite physical. When he shows himself to his followers they not only see him, but he invites them to touch his body which still bears the marks of his crucifixion and he demonstrates his physical nature by eating with them. When I turned the page and began reading in John’s gospel, he writes about the divine eternal Word taking on physical form by saying that the Word became flesh.

Even though I had not planned it this way, spending time thinking about the physical nature of Jesus fits very much into the season of Advent as we anticipate the celebration of the incarnation of Jesus. The physical nature of Jesus has ethical as well as theological implications. If it was important for Jesus to become physical to be our high priest and provide the sacrifice for our sins, then being physical must be an important part of who we are as human beings. Knowing that Jesus had a physical body in his resurrection implies that the eternal existence that we will have after death will be a physical one as well.

All of this helps us to understand that we as human beings exist as an integration of physical body and nonmaterial spirit, not just in this life, but eternally. The integration of body and spirit that is an essential part of our human nature tells us that we are who we are throughout the physical life of our body and should not be considered less than human at stages of development or degeneration during which we are clearly physically present but our non-material mental faculties appear to be absent. It also implies that what we do with our bodies is intimately connected with who we are as a person. We cannot treat our bodies is something that we own and can use for our pleasure without our actions having an impact on who we are as a person. It also means that we who treat our patients’ physical bodies are dealing with something that is sacred.

I pray that as we celebrate Christmas we will reflect on the amazing implications of the eternal Word becoming flesh in the form of a baby born in Bethlehem.

The 14-day rule: Time to double down?

The “world’s leading scientists” gathered at University College London on 7 December 2016 to explore extending the 14-day limit on embryo experimentation from 14 days to 28 days. Presently the consensus of that meeting is not known. The Guardian has published a nice summary of the background and future implications of the issue (link HERE). Jon Holmlund offered his comments in this blog back in May when researchers artificially grew human embryos to 13 days gestation. Since this issue is back in the news, a few additional thoughts are offered below.

Space does not permit a detailed history of the details of the discussion behind the original 14-day rule endorsed by the Warnock Committee in the UK (see HERE for one such extended summary). The original limit was arbitrary but coincided with the development in the embryo of the primitive streak, a precursor to the nervous system, such that experimentation on an embryo before this stage was believed to eliminate the possibility of that embryo experiencing pain. The implementation of the 14-day rule essentially permitted experimentation to proceed resulting in the successful development of IVF.

Regardless of the ethics, the 14-day rule has been a hard barrier scientifically until just recently. Just because we can breach the 14-day barrier, why go beyond? Allowing experimentation on the embryo out to 28 days would allow scientists to learn about the process of gastrulation, the process that lays down the body plan and where the three tissue layers (ectoderm, mesoderm and endoderm) begin to subspecialize. If we have ethically permitted experimentation on embryos up to 14 days gestation, shouldn’t we just nudge it out a little further?

To quote Jon Holmlund: “In the name of God, forbear!” Interestingly, for different reasons, Mary Warnock agrees with him. Per the Guardian article, she worries:” If we raise the limit, objectors could argue that the 14-day rule has remained intact simply because no researcher had the technique to keep an embryo alive for so long, and that now one has been discovered the rush down the slippery slope will follow. They will say: ‘We always knew that the slippery slope would prove itself.’”

Experimentation on a human embryo at 14 days of gestation is still experimentation on a human being made in the image of God. Perhaps the upcoming debate on extending the 14-day rule will actually result in Warnock’s fear, that we agree that the original 14-day limit was indeed too long to be slipping and sliding?

Gattaca validated

In the made-for-bioethics movie Gattaca, when the main character Vincent is born, a nurse in the delivery room draws a drop of his blood, places it in the nifty instant genetic analyzer, and intones, “Heart disorder: 99% probability. Early fatal potential: life expectancy 30.2 years.” (Spoiler alert!) However, Vincent doesn’t let this genetic version of a horoscope control his life, but goes on to beat the odds — and his society’s rampant genetic discrimination — to live and succeed, proving that, contrary to his society’s beliefs, genetics are not determinative.

Now a study in the New England Journal of Medicine has confirmed the message of Gattaca. The study examined patients who have genetic risk factors known to predict heart disease (“Heart disorder: 99% probability”). It also analyzed these patients’ heart-healthy behaviors: eating a reasonable diet, getting some exercise, avoiding smoking, and the like. The study showed that even for those with the highest genetic risk of heart disease, patients who practiced heart-healthy behaviors had less heart disease than patients who didn’t; and that the patients in the highest genetic risk group had the greatest reduction in risk when they practiced such behaviors. In fact, they cut their risk in about half.

Sure, genes confer risk for heart disease. But contrary to popular understanding, they do not confer inevitability.

Over and over I hear my patients say to me, “It’s in my genes. It must be genetic.” They usually are talking about something that they feel they have no control over. Too often they have swallowed the line from the press and pop science, the line that says that genes are determinative. If you are looking to absolve yourself of responsibility for who you are and what you do, the whole determinism thing is extremely convenient: “I can’t help it: it’s in my genes,” you say, smiling gently as you take one more drink too many with your mistress while driving 85mph down the highway, comforting yourself with the “facts” that alcoholism, infidelity, and risky behavior are all genetically determined.

However, if you feel that you’re a responsible human being whose choices actually mean something, you might be thinking that the whole determinism thing is a little fishy.

Genes do exert influence. They are a risk factor in many conditions. But they have been portrayed as way more controlling than is warranted. We are not puppets dangling on doubly-helical strings. There are many things influencing our lives: environmental and socio-economic and biologic and emotional and spiritual and, yes, genetic factors. They all affect and expand or limit our choices. But it is still we who must make the choice. To the situations that affect us we are to a greater or lesser extent able to make response — we are “response-able” — and must not take refuge in our genes, or any other abstracted part of our humanity, to reduce ourselves to automatons following an inexorably pre-determined path.

Christian ethics and the powerless

The recent political campaign and election week have had many of us thinking about politics and government. For those of us who look at bioethics from a biblical perspective we have had to think about how our perspective on moral issues affects public policy and how we as a people govern ourselves. What do we do when no one seems to support a public policy platform that includes both care for the poor and care for refugees that we see in God’s message to Israel through the prophets and respect for the value of every human life including those who are unborn, terminally ill, or disabled who have been made in the image of God?

One thing to remember is that our ethical beliefs are first about how we ourselves should live. For Christians that means being willing to submit to God’s moral truth and live our lives in a way that reflects his goodness and love. Our next obligation is to do what we can to protect those who are the most helpless and on the fringes of society, including influencing public policy to help accomplish that end. That is the focus of much of what the prophets told Israel and what Jesus demonstrated in how he cared for those around him. We need to stand for what is right in every situation, but focus on public policy that protects those who are weak. That can include preventing the unborn from being killed, protecting the old, infirm, and disabled from being euthanized, and providing care, including adequate health care, to the poor, the immigrant, and the refugee.

We should not be surprised that biblical values do not line up fully with any of the major political groups in our very divided and very secular society. We live in a fallen world. The political process recognizes that people are basically self-centered and appeals to that selfishness to get elected whether that involves an appeal to protect the voter’s economic well-being at the expense of others or an appeal to satisfying the voter’s desires without moral limitations. The Bible tells those of us who follow Jesus that our focus should not be on ourselves, but on others, particularly those who cannot stand up for themselves. In a fallen world that perspective is not likely to win elections, but we still need to appeal to the sense of what is right that people have written on their hearts to move government toward protecting and caring for those who are powerless.

So…

Colorado didn’t take my advice.  On Tuesday, voters there approved doctor-assisted suicide by a 2-to-1 margin—65% to 35%.

Ouch.

This is looking like the next social march that may not be stoppable legislatively.  That doesn’t mean people who agree with me on this matter shouldn’t try, but it does seem to mean that we need to prepare for quiet resistance:  really caring for dying people, supporting good palliative care, warning people about the risks of injustice, urging them not to seek this route out, and fighting for the right of doctors and other health professionals to refuse to participate, on grounds of conscience and moral conviction.  That last one is the most obvious place for resistance in statute and regulation.

The arguments in favor of assisted suicide really boil down to a claim of personal control—an illusory prospect, rife for abuse—and hard cases, when available palliative methods come up short of alleviating suffering—to which I think we must say that “hard cases make bad law.”

Wednesday was rightly a day of mourning for many people.  And for me—mainly because of this vote.

Dear Colorado: No on 106

The next battle in the war on physician-assisted suicide is up in Colorado on Election Day, next Tuesday.  Voters there will vote on Proposition 106, the Colorado “End of Life Options Act,” which would provide access to medical aid in dying medication.  The link takes one to the text of the proposed law, including revisions; apparently it was previously referred to as “Initiative 145.”  It appears to be modeled after current laws in Oregon and California.

I hope and pray that Coloradans will vote “No” on this.  As outlined previously on this blog, I believe there are 5 main arguments against doctor/nurse/medical professional-assisted suicide:

·       It destroys the soul of medicine by making the one covenantally pledged to healing into a killer who takes deliberate action to cause death;

·       It diverts energy from emphasizing and improving excellent, compassionate palliative care that cherishes the dignity of a suffering individual without killing;

·       If construed as a “right to choose to die,” it creates a corresponding duty to help kill, and recent developments have shown frank hostility to the notion that a medical professional should be permitted to avoid that “duty” on grounds of conscience;

·       The “slippery slope” argument—that it will not be limited to the terminally ill, nor to those who freely request death, and may in fact be pushed on dying people for financial reasons;

·       The notion of a “right to die” is ultimately incoherent.

If you are reading this and are voting in Colorado, please vote “no,” and encourage others to do likewise.  If you are not a Colorado voter but know one, please contact that voter to urge a “no” vote.

Another Ethical Slippery Slope for A.R.T.?

Medical business opportunities usually seem to make for interesting ethical discussions these days. Forbes recently published an article showcasing Prelude Fertility, an assisted reproduction technology (ART) start-up seeking to combine all the technologies of egg harvesting, cryopreservation and IVF under one umbrella for the purpose of controlling one’s biological clock. Aside from the business issues, the article does a fair job of discussing the medical risks and even some of the ethical concerns. I would like to focus on some of the ethical concerns.

The ethical concerns of standard embryo cryopreservation and IVF fall under two main areas. The first is that IVF often does not use all the embryos created by the process. The frozen embryos not used are human beings not commodities and should not be discarded (i.e. killed) or stored indefinitely (see Steve Phillip’s previous blog entry). The second issue is that although cryopreservation of embryos and IVF have now produced individuals who are beginning their third decade of life, we still do not know for certain what are the long-term health effects of this process (e.g. intelligence, aging, germline, etc.)

Prelude is focusing on an emerging technique of oocyte cryopreservation, which, if successful, will sidestep the first ethical concern – no embryos will be frozen, just the precursor eggs and sperm. Oocytes are very fragile and previous techniques used to cryopreserve them caused their destruction. The newer vitrification process of flash-freezing has significantly improved the preservation success for oocytes. The success rate has sufficiently improved such that the American Society for Reproductive Medicine (ASRM) removed their experimental label from the vitrification procedure. Still ASRM warned: “Marketing this technology for the purpose of deferring childbearing may give women false hope and encourage women to delay childbearing.” They further warn:” There are not yet sufficient data to recommend oocyte cryopreservation for the sole purpose of circumventing reproductive aging”

This is exactly what Prelude is doing. One of the marketing points is that this process allows women to delay pregnancy to when it is more convenient for their career advancement. The long-term health concerns listed above for embryo cryopreservation are equally valid for oocyte cryopreservation – we simply do not yet know all the long-term human health consequences.

The CEO of Prelude, Martin Varsavsky, is putting his entrepreneurial money where is his mouth is, so to speak. He and his wife are expecting the first Prelude baby this January.

Marketing bravado aside, is career or lifestyle convenience really a good reason to go where ART has not ethically gone before?*

*apologies to Gene Roddenberry

A Canadian physician’s defense of rights of conscience

A friend who teaches at the University of Toronto recently made me aware of what Ewan Goligher has written about rights of conscience in the context of the legalization of physician assisted death in Canada and the push by many there to require physicians provide effective referral for physician assisted death. Dr. Goligher is an academic physician who specializes in internal medicine and intensive care medicine in Toronto. He has expressed quite well the reasons why he is unable in good conscience to participate in or make referrals for physician assisted death in a letter to members of the Canadian Parliament and in an article in the National Post which I would recommend that you read.

Among the points that Dr. Goligher makes two strike me as being most significant. One is that a physician should only do those things that are both legal and morally right. Being legal is not sufficient reason to believe that something that a patient requests is the right thing to do. Physicians owe a duty to their patients not to do something that the patient requests if what is requested would be harmful to the patient. We should respect patients’ ability to make decisions about their own lives and should not force patients to do something they do not want to do, be we should not cause harm to patients even if they request it. Our duty is to the good of the people we treat and not just a duty to do what they request.

The second is his explanation for why making an effective referral for physician assisted death is wrong in the same way that prescribing the means of death is wrong. He makes his point by making an analogy to making a referral for female genital mutilation. Like all analogies it cannot be taken too far since physician assisted death under the Canadian law is presumed to be based on the free decision of the one making the request to die and genital mutilation is being requested by someone who has surrogate decision making authority for the one being acted upon, but the analogy holds well in showing that in such a case making a referral can easily be seen as being wrong in the same way as doing the act.

My thanks goes to Dr Goligher for his well-written expression of why physicians should have the freedom to refuse to participate in or refer for procedures they understand to be immoral. If you are reading this and happen to be in the Toronto area, Dr. Goligher will be speaking on this issue in a talk at Wycliffe College on October 27 at 7 PM sponsored by the deVeber Institute for Bioethics and Social Research.

More on Gene Editing

One version of the headline of a news item in Nature this week is, “UK bioethicists eye designer babies and CRISPR cows.” The UK’s Nuffield Council on Bioethics has just released a report, “Genome editing: an ethical review.”  The full report and a short summary are available for download here.

I must say that my understanding of recent bioethical reflection in the UK leads me to believe that the Nuffield Council’s position will, eventually, tend toward “let’s press ahead with any use of this as long as we can convince ourselves that the benefits are worth pursuing.”  The approach will likely be a focus on near-term benefit-risk assessments that sideline larger ethical concerns about the implications of certain applications—e.g., edits of human genes that can be passed on from generation to generation—that seem abstract or “religiously motivated” (my term here, not theirs).

But I have not been through the full report.  The short form does provide a quick listing of many salient ethical concerns, such as:

  • ·       Relative ethical merits of editing genes to treat a specific disease in an existing individual vs more momentous steps like editing human embryos (along with the resultant issues of the inherent ethics of the necessary experiments, and a potential “demand” for embryos for research), or future attempts at genetic enhancement of humans;
  • ·       Ecologic risks of using “gene drives” to alter pest populations in the wild, or even using genetic editing in an attempt to re-introduce extinct species;
  • ·       Potential for creative recklessness by amateurs or creative malevolence for military use;
  • ·       The potential for using gene editing to make plants or animals for food hardier, e.g., by making pigs or cows disease-resistant.

The Council says some of the above would be of concern to at least “some people.”  The short report says that the Council concludes, “When we think about how genome editing should be used, it is important to also think about how it should be governed. Given the public interest in the use of genome editing, an approach will need to be found that acknowledges that people arrive at these questions with different values, priorities and expectations. “

Of the many issues, the Council counsels addressing two urgently:

1.       Livestock—research into gene editing of animals for food is relatively well advanced, but the regulatory regime needs to catch up, to address issues of economics, international trade, and food security.  Concerns also include animal welfare and how to label “edited” meat at the supermarket.  This is worth further, more detailed discussion, perhaps on future posts, but somehow I sense a bit more than a post-Brexit fight between the UK and the Continent over GMO foods is in view here.

 

2.       Human reproduction— One member of the Council’s Working Group said, “Human reproductive applications are perhaps the most talked about or controversial area.”  (Gee, ya think?)  From the short report:  “Of all the potential applications of genome editing that have been discussed, the one that has consistently generated most controversy is the genetic alteration of human embryos in vitro. Research undoubtedly has a very long way to go before any application of this sort could be contemplated [but never mind that it has already been at least attempted in “non-viable” human embryos] and, in the UK at least, the transfer of an edited embryo to a woman is currently prohibited by law. Nevertheless, such applications are theoretically possible and there are strong moral arguments for them, at least for limited purposes, as well as against. The principal challenges are the very difficult questions of what would be required to demonstrate safety and efficacy, and of resolving the ethical arguments for and against attempting it. It is therefore appropriate to consider carefully how to respond to this possibility before it becomes a practical choice. Addressing these difficult questions now will help to meet concerns that technology is rushing ahead of public debate and allow such debate to influence the development of the technology, distinguish acceptable from unacceptable aims, and reduce the uncertainty and ambiguity for researchers and potential recipients of the technology.”

I agree with the urgency, but the Council’s statement sounds to me a bit too sanguine, too “proactive” or “progressive,” too favorable to the prospect of altering individual human genomes fundamentally.  As I have said previously on this blog, I believe that editing of human embryos or germ cells should simply not be done, at least for now, and probably not ever.  Ethical discussions should not be informed by a “proactive” stance, but rather by a “presumption to forbear.”  And I suspect, that like “three parent babies” (see Mark McQuain’s September 29 post), and like IVF, we will be presented with a fait accompli from somewhere before the ethical arguments are “resolved.”