Bad News

Many of us have witnessed the giving of bad news to a patient.  It is never a pleasant experience.  Unfortunately, some medical professionals are simply not skilled enough to share bad news in a way that is both compassionate and comprehensible.  And even if they are, it is still bad news after all. 

Recently, the media reported the story of a patient and family in California who received bad news via “a robot.”  On its face, that doesn’t sound like a very good idea.  If you take a minute to watch the clip from CNN’s website, you can see a doctor speaking to a patient through a video device, so it wasn’t exactly a robot delivering the news.  It’s a short clip, so it is difficult to reach a conclusion on the nature of the encounter, but it is clearly bad news for the patient.  The media reported that the family was upset, the HLN news anchor called it “callous,” and those of us who work with patients on a daily basis see another setback in patient relations.

In an important reaction to this story, ICU physician Dr Joel Zivot notes several salient points:

“This is not a failure of technology, it seems. More likely, it was a failure to communicate via anymethod. Medical schools are bad at teaching how to deliver bad news. Patients often don’t know how to receive it, either. A doctor-patient relationship of trust can successfully occur over the phone and be bungled completely in a fac-to-face encounter. We do not know the mind of the doctor, of what came before, or the mental state of the patient or his granddaughter. Absent that, this story tells us nothing about whether remote technology should be used to deliver this sort of news.”

More training is needed for these important conversations.  There are multiple resources available for those willing to learn, including the SPIKES framework, noted by Craig Klugmanin a recent blog.  Above all, we must continue to respect the humanity of each patient.  As Zivot concludes, “Technology is the helper to the physician but not presently the replacement. If we allow the technology to strip away our common humanity, we will all be diminished as a consequence.”

Oh, Those Darned Terms (part 2)

By Mark McQuain

Voltaire has been credited with saying: “If you wish to converse with me, define your terms”. In a previous blog entry, Tom Garigan reminded us that it is literally vital that we define our terms when we engage in ethical debates, particularly those ethical debates related to the beginning of life. Explicit definition of terms should apply for opinion pieces in the New England Journal of Medicine (NEJM) as well.

In a recent NEJM Perspective (subscription required), Cynthia Chuang, MD, and Carol Weisman, PhD, are concerned that the Trump administration’s November 15th publication of final rules (HERE and HERE), broadly allowing employers to deny contraceptive coverage to their employees on the basis of religious or moral objections, will “undermine women’s reproductive autonomy and could lead to an increase in rates of unintended pregnancies, unintended births, and abortions.” The article provides a summary of the political back and forth of court injunctions and rule modifications that have ensued, which is interesting but not the point of this blog entry. I want to focus on one of the four main objections they raise against allowing employers religious or moral exemptions from the current requirement that employers provide all FDA-approved contraceptive/birth-control methods.

There are 18 FDA-approved Birth Control methods for women provided by the Patient Protection and Affordable Care Act (commonly called Obamacare or ACA) without cost-sharing [that is, at no cost to the patient]. These are also referred to as contraceptives. A contraceptive is defined as a method that prevents pregnancy. Pregnancy has been defined as either beginning at conception (the union of an egg and sperm that results in a fertilized egg) or beginning at implantation of a fertilized egg into the lining of the uterus. This difference in definition impacts how one views certain contraceptive methods that may work in part by preventing a fertilized egg from implanting into the wall of the uterus. Any contraceptive method that prevents implantation causes the intentional death of that fertilized egg and would correctly be an abortifacient (a birth control method that causes an abortion) if pregnancy is defined as beginning with conception. An intrauterine device (IUD) and Levonorgestrel (PlanB) both work primarily by preventing the egg and sperm from joining to create a fertilized egg, but some argue that it can not be proven that these methods don’t also work, in part, by preventing implantation ((PlanB) (IUD).

This background is useful in discussing Chuang and Weisman’s third objection to allowing employers religious and moral objections against the full gamut of FDA-approved birth control methods currently allowed by the ACA:

“Third, the rules allow entities to deny coverage of contraceptives to which they have a religious or moral objection, including certain contraceptive services “which they consider to be abortifacients.” By definition, contraceptives prevent pregnancy and are not abortifacients. Allowing employers to determine which contraceptives they consider to be abortifacients, rather than relying on medical definitions and evidence, promotes the spread of misinformation.”

The previous link on IUD by the American College of Obstetrics and Gynecology (ACOG) relies on the definition of pregnancy that defines pregnancy as beginning with the implantation of a fertilized egg into the lining of the uterus. Neither an IUD nor Plan B are believed to terminate a pregnancy after implantation and therefore, under ACOG’s definition, the one relied upon by Chuang and Weisman, neither is an abortifacient. If pregnancy begins with conception, then both Plan B and the IUD are potential abortifacients, as both interfere with implantation of an otherwise viable fertilized egg. ACOG admits the IUD interferes with implantation in their position paper linked above.

Rather than rhetorically condemning employers who have genuine religious and moral concerns about participating in the termination of innocent life by implying they fail to rely on proper “medical definitions and evidence”, Chuang and Weisman (and ACOG for that matter) should do better job explaining their definitions so they can also avoid promoting “the spread of misinformation”.

Oh, those darned terms!

The (at least, an) other side of the argument about heritable human gene editing

By Jon Holmlund

Last week’s New England Journal of Medicine (subscription required) included four articles addressing heritable human gene editing (HHGE, if you’ll allow the acronym).  All assumed that it would or should go forward, under oversight, rather than seeking a moratorium.  One took the position that a moratorium is a bad idea, because the “rogues” would press ahead anyway, and the opportunity to create meaningful partial barriers to at least slow down what could easily be a runaway train.

This week, a group of prominent scientists in the field, representing seven nations, take the other side in Nature.  They call for an international moratorium on HHGE.  This is not a permanent ban, nor is it an international treaty banning HHGE until a subsequent action removed the ban.  Rather, they propose that for a fixed time (they suggest 5 years), nations as a group agree to block, and scientists and clinicians agree to abstain from, any attempt to bring a gene-edited baby to pregnancy or birth.  The scientists writing this week would allow research on human embryos to proceed, as part of a broader effort to define the reliability and safety of the editing—something they say has clearly not yet been established. 

During the moratorium, hard work would need to be done for societies to define what people should be edited.  The scientists suggest that HHGE would rightly be limited, pretty strictly, to “genetic correction,” meaning cases in which a defect of a single gene known to cause, or almost certainly to cause, a serious disease would be corrected.  They would not permit genetic enhancement absent “extensive study” into long term and unintended effects, and even then, they say, “substantial uncertainty would probably remain.”  Genetic enhancement, in their view, would include altering genes that increase the risk of diseases.  They don’t cite examples, but it appears that abnormalities like BRCA1 mutations that increase cancer risk are in view here.  Further, which medical conditions would have no alternative to HHGE must be determined.  In most cases, IVF and preimplantation genetic diagnosis would likely suffice, obviating the need to take the profound additional step of HHGE (whatever one may think of the moral status of the human embryo).  The cases eligible for HHGE, they suggest, would be “exceedingly rare,” limited to essentially unavoidable situations for which a “small minority” of genetic diseases is caused by a genetic abnormality that is frequent in the population.  (It seems like such situations would be rare indeed.)  In such cases, they say, “legitimate needs” of couples seeking to have unaffected, biologically related offspring would need to be weighed against “other issues at stake.”

Most critically—and, hardest to achieve—the scientists envision a broad, intensive effort, that is not limited to or driven by scientists and physicians, and that goes beyond current regulatory regimes to include all aspects of society in an effort to achieve broad consensus—neither simple majority nor unanimity, but a situation in which the clear, large majority opinion exists on when and how HHGE should be countenanced.

Whether these tasks could be pulled off in five short years is something to wonder about, and even allowing planning for HHGE under these constricted circumstances raises questions about how we understand our humanity, whether embryos should be treated as raw materials in development of new treatments, and other matters that go deeper than discussions of medical, scientific, and population risks and benefits.  Were the tasks achieved under a moratorium, the authors envision that individual nations would be sovereignly free to go separate ways, with some allowing HHGE, but perhaps others not.

The editors of Nature, without taking a side about a moratorium per se, call for rules to be set, broad societal conversations to take place, research to be carefully overseen to be sure it is on a “safe and sensible” path and to identify and stop the “rogues,” and journals to refuse to publish work that transgresses limits in place at the time.

With something this big, a “presumption to forebear,” rather than a proactive drive to progress, should be the dominating sentiment.  The details are too complex to address in a few articles, a few short blog posts, a few minutes on cable news, or a few passing conversations wedged into the cracks of busy lives.  We should slow down.  We should ALL call for a moratorium. b

Human germline gene editing is not a solution for genetic diseases

By Steve Phillips

I have said this before (see post on 12/5/18), but since otherwise intelligent people continue to say that we should pursue human germline gene editing because it can be used as a means of eliminating the transmission of genetic diseases to future generations, I need to say it one more time. There is no reason to expect that editing the genes of human embryos will ever be a practical and effective way to eliminate the transmission of genetic diseases to future generations.

There are several reasons for this. One is that the elimination of genetic diseases in future generations would require the widespread screening of all potential parents to identify everyone who would need to use this technique for it to actually eliminate a genetic disease. There is no reason to think that that will ever be practically possible and if it were possible it would require an extreme limitation on personal liberty (think Brave New World). If genetic diseases cannot be eliminated using this technique, then what those who take this position must be advocating using it as a means for a particular couple to avoid passing on a genetic disease when they know that they are carriers of that disease. There are additional reasons why gene editing will not be practical and effective for that.

If the couple’s sole priority is to eliminate the possibility of passing on the genetic disorder that they carry to a child, the simplest and most effective way to accomplish that is to choose not to conceive children. That means that their desire to have and raise children would need to be fulfilled through adoption, but it is the most effective way of achieving the goal of not passing on the genetic disorder that they carry. If this method is not chosen, the couple must recognize that they are trying to accomplish two goals, both having their own biological child and not transmitting the inherited disease.

For the large majority of couples trying to accomplish both of those goals the method with the least risk and highest likelihood of success would be creating a child through IVF and using preimplantation genetic diagnosis (PGD) to choose an unaffected embryo to be implanted in born. However, this method carries significant moral concerns related to the creation and elimination of embryos who have the genetic disorder. Some might think that this moral concern would be a reason to choose gene editing instead, but it is not that simple. The development of the technique of human embryonic gene editing will require using human embryos as research subjects who will be destroyed as an essential step in the research to establish the effectiveness of this technique. This means that it is not a morally superior technique for those who are concerned about the value of the life of a human embryo.

If a couple would choose to pursue embryonic gene editing for the purpose of having a biological child who did not suffer from a genetic disorder that the couple carries, there are still other problems. If gene editing is being used to transform an embryo with a genetic disorder to an embryo without that genetic disorder, it would be necessary to be able to determine that the embryo actually has the disorder before doing the gene editing. Except for the case of two potential parents homozygous for a recessive disorder, some diagnostic test would be needed. We can currently diagnose many genetic disorders in a multi-cell embryo produced by IVF by using PGD. However, for embryonic gene editing to be effective in completely removing the genes for a genetic disorder and replacing them with normal genes the best time to do the gene editing is at the single cell stage. Even if it is established that gene editing can be done effectively and safely, it is hard to see how we would be able to establish that a single cell human zygote has the genetic disorder prior to treating that single cell.

For all of these reasons, the situations in which human embryonic gene editing would possibly be the preferred means of creating a child without a genetic disorder would be quite rare. It is much more likely that the technique would be used for enhancement.

One side of the argument about heritable human gene editing

The current issue of the New England Journal of Medicine (subscription required) includes four new articles addressing heritable human gene editing.

George Daley (who was also discussed in a post on this blog last December 6) argues that work must proceed to find a responsible way of editing the human germline for people with genetic diseases that are devastating, untreatable, and largely unavoidable unless affected people forego having children.  This would be a limited use of heritable gene editing, he holds, although it may ultimately become attractive to the 1-4% of offspring of unrelated people who have genetic diseases, who seek to eliminate risk of passing on those diseases, or risk of them, to future generations.  He thinks that “our ignorance” regarding genetic complexity will ultimately prevent attempts at begetting genetically enhanced, “designer” children.

Matthew Porteus reviews “the new class of medicines” becoming possible due to DNA editing.  These include genetically modified cells as drugs, other attempts to treat existing people with known genetic disease by editing genes in part of their bodies, and, eventually, editing humans so that the genes they transmit to future generations are permanently altered. 

Lisa Rosenbaum reviews several of the objections to heritable gene editing that can stand in the way of scientific and social consensus.  Among these, she points out that people with disabilities often live very fruitful lives—lives that may never have come to be if their parents had the chance to edit their genomes, or not brought them to birth in favor of another embryo selected, without editing, through preimplantation genetic diagnosis.  But some disabilities are too severe to allow fruitful lives.  In such cases, she asks, “who is qualified to decide whether it is ethical to alter these children’s fate?”  If you think you can edit a baby destined to suffer severe genetic disease, are you obligated to try?  In that case, there’s “no such thing as an ‘informed decision’…you can’t know until you know.”

Alta Charo, who has co-led several recent prominent international conferences on human gene editing, argues that the “rogues” will proceed to edit people irresponsibly, even—and perhaps especially—in the face of a moratorium.  A more effect approach would be an “ecosystem” of restrictions, including formal regulation, restriction on supplies of raw materials (that is, human eggs, sperm, and embryos) for experimentation, patent and licensing restrictions, health insurance policies, liability for lawsuits, and the like.  Broad, international consensus is an unlikely prospect, she argues, but individual nations may enact their own regimes.  Whether this would really stop a black market is questionable, and heritable editing would become the province of favored entities (government or industry), I suppose—perhaps slowing the whole process down but leaving objections to the practice unsatisfied.

Each of these authors condemns He Jiankui’s claimed editing of Chinese twin girls who were born late last year.  Each of them also clearly takes the position that human gene editing should be regulated, either because it should proceed or because it will, inevitably, proceed. 

None of the authors suggests that heritable human gene editing should “never” be done, the position Francis Collins, the head of the US National Institutes of Health, took on Gerry Baker’s WSJ at Large on the Fox Business Network on Feb 22, 2019.  (I would link it but it appears that the clip has not been preserved on the network’s website.)

This blog recently recounted some reasons why heritable human gene editing should not be pursued.  But the train appears to have left the station.

Abortion and viability

By Steve Phillips

There has been considerable reaction to the recent passage of a New York State law a regarding abortion. It has been celebrated by those who support a woman’s choice to have an abortion at any time and for any reason and strongly opposed by those who believe that a human fetus has a life that should be greatly valued because he or she has been created in the image of God. The new law basically changes two things in the previous New York State abortion law which led the way in the legalization of abortion prior to Roe v. Wade. One is that it expanded those who can legally perform and abortion in the state to include nurse practitioners, physician assistants, and midwives in addition to physicians. I will not be discussing that here. The other changes have to do with the circumstances under which an abortion may legally be done after 24 weeks gestation.

The 1970 law stated that an abortion could be done legally for any reason prior to 24 weeks, but only to protect the life of the mother after 24 weeks. Why 24 weeks? 24 weeks gestation was considered to be the limit of viability for a fetus in 1970. Today it would probably be more like 22 weeks, but they didn’t change that. What has changed in the new law is that abortion is considered legal after 24 weeks if there is an absence of fetal viability after 24 weeks or to protect the life or health of the mother. This significantly expands the cases in which abortion after 24 weeks can be considered legal. Roe v. Wade already expanded it in the second way. In that decision the Supreme Court ruled that the state could have an interest in the life of the fetus later in the pregnancy that it did not have early in the pregnancy but limited that interest by saying that a state could not say that an abortion was legal if it was done to protect the life or health of the mother. A companion decision made at the same time stated that the health of the mother should be interpreted very broadly to include the emotional well-being of the mother. That left us with the current situation in which the United States has the broadest definition of a legal abortion in the world.

The thing that I find most interesting about the new law is that it keeps the distinction between abortions done before and after 24 weeks and that it adds the condition that an abortion after 24 weeks can be legal in the absence of fetal viability. If the law is going to say that an abortion can be legal at any time during the pregnancy based on the mother suffering emotional distress, why would those making the law be concerned about fetal viability? I think that what is being said by those who have written and passed this law is that until a fetus is capable of living independently of his or her mother the life of that fetus has absolutely no value other than the value conferred by his or her mother. They want that to be contained in the law even if it actually makes no practical difference regarding the legality of abortion. Why is that so important?

I think it is important because the fundamental underlying issue regarding the permissibility of abortion has to do with how we determine who is a person who we are obligated to treat as we would want to be treated ourselves. It is essential for those who support the moral permissibility of abortion and therefore its legality to say that a fetus is not such a person. The best way to do that is to say that an individual is only a person with full moral status when that individual has certain capabilities that are like ours. One of those capabilities which can be fairly clearly defined is viability. If people can be convinced that they should look at capabilities such as viability to determine who we are obligated to treat like ourselves it will distract them from the alternative way of determining that. The alternative is to say that every human being, or every member of the human family, no matter what their level of development or capabilities is a person that we should treat as we would want to be treated ourselves. That means that every human being who is weak, helpless, and marginalized has equal value with the strongest and most privileged of human beings. That is the position of those of us who believe that every human being is important because we have been made in the image of God. That includes everyone who is dependent including those who are dependent to the point of being unable to survive outside their mother’s womb.

Justice Potter Stewart’s Infanticide Equivalent

By Mark McQuain

Regular readers of this blog will hopefully forgive me for repeating myself but given the recent failure of the “Born Alive Abortion Survivors Protection Act” (BAASPA) in the Senate, the repetition seems warranted.

My concern is not specifically the result of the failure of this particular bill. We indeed already have a “Born-Alive Infants Protection Act of 2002” (BAIPA), which passed by voice vote in the House and Unanimous Consent in the Senate, and accomplishes (as best as I can tell) essentially everything demanded in the BAASPA, including granting 14th Amendment personhood protection of such a baby under federal law. The arguable difference between the existing law, BAIPA, and the failed bill, BAASPA, is that the latter specified legal punishment if certain resuscitative measures were not performed.

Supporters of BAASPA argued that, despite BAIPA, examples continue to exist of babies who are otherwise normal and healthy at their stage of gestation that were born alive post abortion attempt and were subsequently allowed to die without attempts at resuscitation, effectively resulting in infanticide. Pro-choice advocates argued against the passage of BAASPA claiming the legal punishments within the bill would ultimately limit abortion providers from providing the full range of abortion services permitted under current law out of fear of legal recrimination. For the purpose of this particular blog entry, I will concede that both concerns are valid and simply state, given my pro-life position, that the moral weight of the first position infinitely outweighs the second. I want to focus the remainder of this blog on two public comments by prominent lawmakers regarding the status of any baby born post abortion.

The first comment was by Virginia Governor Ralph Northam and covered in my previously linked blog entry above. During a radio interview he described what would happen during a third trimester abortion if the woman went into labor: “The infant would be resuscitated if that’s what the mother and the family desired, and then a discussion would ensue between the physicians and mother…” The second comment was by U.S. Senate Minority Leader Chuck Schumer. He expressed concern that the BAASPA legislation would force doctors to provide care to a baby born alive post abortion attempt even if that care was “ineffective, contradictory to medical evidence, and against the families’ wishes.”

In both cases, what the family “desired” or “wished” prior to the abortion procedure was not a living baby. Current law permits a family with a “desire” or “wish” to terminate the life of a fetus to do so without any legal recrimination. Current BAIPA law grants all babies born alive the 14th Amendment protection of personhood, including life, liberty and the pursuit of happiness, regardless of the “desires’ or “wishes” of others. I believe it is a huge stretch to argue that these comments were meant to only apply to babies born so medically compromised that any attempt at further life-sustaining care would indeed be ineffective and/or contradictory to medical evidence – in short, futile.

I close again with Justice Potter Stewart’s infanticide equivalent from 1972 Roe v. Wade oral argument testimony between Justice Potter Stewart and attorney Sarah Weddington, who represented Roe (see LINK for transcript or audio of the second reargument Oct 11, 1972, approximately one-third of the way through):

Potter Stewart: Well, if it were established that an unborn fetus is a person within the protection of the Fourteenth Amendment, you would have almost an impossible case here, would you not?

Sarah R. Weddington: I would have a very difficult case. [Laughter]

Potter Stewart: You certainly would because you’d have the same kind of thing you’d have to say that this would be the equivalent to after the child was born.

Sarah R. Weddington That’s right.

Potter Stewart: If the mother thought that it bothered her health having the child around, she could have it killed. Isn’t that correct?

Sarah R. Weddington: That’s correct.

The Abuse of DNA Technology

By Neil Skjoldal

In a provocative article entitled, “China Uses DNA to Track its People, With the Help of American Expertise,” The New York Times tells the story of how the Chinese government is using DNA information in part to make the Uyghurs, “a predominantly Muslim ethnic group, more subservient to the Communist Party.”

To accomplish this task, The Times states that the Chinese government used technology made by Thermo Fisher and “genetic material from people around the world” provided by Dr. Kenneth Kidd, a Yale University geneticist.  Apparently, the assumption was that the Chinese would follow the ethical norms followed around the world.  Ethicist Dr. Arthur Caplan is quoted in the piece:  “Honestly, there’s been a kind of naiveté on the part of American scientists presuming that other people will follow the same rules and standards wherever they come from.”  Recently, under heightened scrutiny, Thermo Fisher stopped its sales of genetic sequencing equipment in Xinjiang.

The abuse of technology for autocratic purposes was strongly condemned by Senator Marco Rubio of Florida:     “The use of this technology allows the Chinese government to commit truly  egregious invasions of privacy and other human rights abuses, including the internment of over a million ethnic Uyghurs and other Muslim minorities. The sale of DNA sequencers to agents of Chinese state security should never have been approved in the first place and I believe the Commerce Department needs to establish clearer licensing requirements on technology and other items used by the Chinese government to censor, detain, and surveil.”

The ability to do DNA research is an incredible scientific and technological achievement.  But this case raises a question that must be answered, specifically, What is the ethical responsibility of the corporate world with regard to the abuse of the technology?  If they naively continue to follow these practices in similar cases, we must ask who will defend the voiceless against governments that want to make them “more compliant.”

The new WHO advisory panel on human gene editing

By Jon Holmlund

The World Health Organization (WHO) has empaneled an expert advisory committee to propose standards for governance and oversight of human gene editing.

This group is to meet in Geneva on March 18 and 19 to review the state of the field, broadly, and formulate a plan for its work, over the ensuing 12-18 months.  Sounds like your basic organizational meeting. 

The WHO website does not specify a more detailed charge for the committee, which no doubt will determine its goals.  It is said to have been formed “after an open call for members,” implying, I suppose, that the members volunteered, as opposed to being invited or otherwise prevailed upon.

The co-chairs are Edwin Cameron, former Justice of South Africa’s Constitutional Court, and Margaret Hamburg, who, among her other positions, was FDA Commissioner under Barack Obama.

A review of the full list of biographical sketches for the members shows that they are a truly international group, representing nations from the developed and developing world, and from all continents (except Antarctica, of course).  They are a mix of physicians, biologists, and ethicists.  None appears immediately recognizable from the recent media coverage of human gene editing.  If there are members with a specific interest in promoting technology, that is not obvious from the list, which WHO further says was limited to people screened carefully for conflicts of interest.

One can tell but little from such bio sketches, but in this case it at least appears that a broad range of cultural perspectives will be represented.

There is no clear representation for a theistic or religious perspective.  Also, because the work of such a group naturally draws and involves scientific specialists, the broader, non-scientific, “lay” public is not represented.

Past work by these members addressing gene editing will be of interest to review, which your present correspondent has not, yet.

One hopes that this group will offer wise counsel that, as discussed in prior posts to this blog and elsewhere, goes beyond the usual, limited “benefit-risk” estimates that characterize Western bioethics.

But it will unavoidably not constitute the broad, cosmopolitan, multinational and multiethnic, naturalistic and theistic dialogue that is hoped for—probably too much to hope for, too much to ask of a group of 18 people—in advance of broad adoption of heritable human gene editing, which appears inexorable.

Godspeed and best of success to this group—follow its work as closely as possible. ity51 \lsdl

Informed Consent and Genetic Germline Engineering

By Mark McQuain

I recently read, with admittedly initial amusement, an article from The Daily Mail that described a young man of Indian decent who was intending to sue his parents for giving birth to him “without his consent.” Raphael Samuel, a 27 year-old who is originally from Mumbai, is part of a growing movement of “anti-natalists”, who claim it “is wrong to put an unwilling child through the ‘rigmarole’ of life for the pleasure of its parents.” While he claims he loves his parents and says they have a “great relationship”, he is bothered by the injustice of putting another person through the struggles of life “when they didn’t ask to exist.”

While I was amused at the absurdity of asking a non-existent entity for permission to do anything, I began to wonder whether my position against germline genetic engineering should continue to include the lack of informed consent by the progeny of the individuals whose germline we are editing.

I have made the claim on this blog previously that one of my arguments against germline genetic engineering is that it fails to obtain the permission of the future individuals directly affected by the genetic engineering. Ethical human experimentation always requires obtaining permission (informed consent) of the subject prior to the experiment. This goes beyond any legal issue as many would consider Autonomy the most important principle of Beauchamp and Childress’s “Principles of Biomedical Ethics”. Informed consent is obviously not possible for germline genetic engineering as the future subjects of the current experiment are presently non-existent at the time of the experiment. While I believe there are many other valid reasons not to experiment on the human genetic germline, should the lack of informed consent continue to be one of them?

In short, if I am amused at the absurdity of Mr. Samuel’s demand that parents first obtain their children’s permission to be conceived prior to their conception, is it not equally absurd to use the lack of informed consent by the progeny of individuals whose germline we are editing as an additional reason to argue against genetic germline engineering?