International Commission on HHGE Channels Warnock Committee

In various ways, the International Commission on Heritable Human Genome Editing (HHGE) is built on the same grounds as the former Committee of Inquiry into Human Fertilisation and Embryology (Great Britain).  That committee was charged to “consider recent and potential developments in medicine and science related to human fertilisation and embryology; to consider what policies and safeguards should be applied, including consideration of the social, ethical and legal implications of these developments; and to make recommendations.”[1] 

The Committee of Inquiry into Human Fertilisation and Embryology became known as the Warnock Committee, named for its chair, philosopher (later, Baroness) Mary Warnock.  The  “recent” development of concern was a reference to the birth of Louise Joy Brown on July 25, 1978:  the world’s first baby born through in vitro fertilization (IVF).  “Potential” developments the committee addressed during their two-year stint included the use of human embryos in drug testing; nucleus substitution (cloning) to provide replacement organs; and the insertion of “replacement gene(s)” for genetic defects.[2]  These all have in common the use of embryos for research.  The majority of the Warnock Committee argued that if the embryo could not feel pain, and “there were no absolute outrage of general moral sentiment,” then “the embryo might be used for research”[3] In her memoir, Warnock wrote that, in the Warnock Committee deliberations, the “disputes were on the whole civilized:  we did not have any rampaging pro-lifers on the committee . . .”[4]


The recommendations made by the Warnock Committee became Britain’s Human Fertilisation and Embryology Act of 1990 (HFE Act) and gave rise to the regulatory agency, the Human Fertilisation and Embryology Authority (HFEA), established 1991.  The latter is the body responsible for the licensing and inspection of all labs in the U.K. that deal with IVF, donor insemination, and human embryo research, as well as the storage of sperm or eggs.  The HFEA also regulates and oversees the use of mitochondrial replacement techniques (MRT) in the United Kingdom.  The International Commission on Heritable Human Genome Editing (HHGE) used the MRT example to design it own “translational pathway”:

By a “translational pathway’ for HHGE, the Commission means the steps that would be needed to enable a proposed clinical use to proceed from preclinical research to application in humans. Elements that formed the pathway leading to clinical use of mitochondrial replacement techniques in the U.K. have informed the Commission’s development of a clinical pathway toward HHGE, presented in this report. (p 39/225)

The HHGE has, as a portion of its task,

a need for a framework to inform the development of a potential pathway from research to clinical use, recognizing that components of this framework may need to be periodically revised in response to our rapidly evolving knowledge. In addition, other important discussions are ongoing internationally about the implications for society of human germline genome editing and include issues such as access, equity, and consistency with religious views. (p 44/225)


Here’s hoping the HHGE will do a better job of listening than the Warnock Committee did.  Natasha Hammond-Browning, evaluating the Warnock Committee’s handling of the pieces of evidence submitted to it, concluded this:

. . . the Warnock Committee adopted a utilitarian approach in drawing up its recommendations, and it could be assumed that any evidence that adopted this approach would have been favoured over other bright line viewpoints; for example, the view that the embryo must be protected from conception, or the view that the embryo/foetus should not be protected at any stage of development.[5]



[1] Mary Warnock, A Question of Life:  The Warnock Report on Human Fertilisation & Embryology, (Oxford, UK: Basil Blackwell, 1985), 4.

[2] Ibid., 71-4.

[3] Ibid., xv.

[4] Mary Warnock, A Memoir – People & Places (London: Duckbacks, 2002), 33.

[5] Natasha Hammond-Browning, “Ethics, Embryos, and Evidence:  A Look Back at Warnock,” Medical Law Review 23(4): 588-619; doi: 10.1093/medlaw/fwv028.


A Tale of Two Elders

Concern for elderly relatives and friends has been heightened during the coronavirus pandemic.   In the last month, I have visited two nonagenarians:  one was in the assisted living portion of a large multi-level care facility; the other, in her own home.  In both, frequent hand washing or sanitizing by visitors was done.  The assisted living facility visit required a mask and at least six feet of distance between us at all times.  The second nonagenarian refused to wear a mask, and we ate several meals together, maintaining some interpersonal distance.  Both visits were incredibly special, and I am grateful that we all continue to be well.

Thanks to Andrew Cockburn’s “Elder Abuse” article in Harper’s Magazine, I have formulated some important questions to ask about the care facilities for elderly that abound in our nation.  These should be helpful for relatives and friends who are either in long-term care facilities, or contemplating moving into one:

  1. Are you/will you be close to concerned relatives or friends, or far from any potential visitors?
  2. How often are visitors allowed?  What are the rules, including during a pandemic?
  3. Who owns the facility?  Have there been any fines levied for substandard care/other problems?
  4. Is the facility in a state that has legislation holding harmless the facility during this pandemic?
  5. Does the state where the facility is located have an ombudsman for senior care?  Is that office functioning now?
  6. Is there a local newspaper/reporter who publishes on senior issues?  Read their articles, and consider sending an email to interact with the writer of any article on elder concerns.  Building bridges in the community is important.
  7. Not to put too fine a point on it, but who will be paying for the care?  The “Elder Abuse” article points out that nursing homes strive to obtain the “right mix” of Medicaid and Medicare patients.  A COVID-19 diagnosis can benefit facilities monetarily; but then, so can discharging Medicaid patients in an effort to open beds for patients with higher-paying Medicare benefits.

Using data from the World Health Organization, Cockburn reports the differences between, inter alia, the United States and Greece, in terms of elderly casualties from COVID-19.   The United States has 515 nursing home beds per 100,000 population; Greece, 15.  The United States has 39 COVID-19 deaths per 100,000; Greece, with the “largest proportion of elderly people in Europe,” has two deaths per 100,000.  The author suggests, “One might almost conclude that the death toll that has so traumatized and destabilized much of Western society in 2020 was not wrought principally by the coronavirus, but by nursing homes.”

The nonagenarians I recently visited are both Americans.  The masked 93-year-old in an assisted care facility has been restricted from speaking with other residents he meets in the hallway or when he walks outside on the well-manicured grounds.  He has spent months having meals delivered to his room where he eats alone.  He spends thousands of his retirement dollars per month, but cannot be said to be happy with his purchase.  The other nonagenarian I visited lives alone.  She has not seen the inside of a store since March, because other people shop for her, using lists she has provided.  Her budget is significantly smaller than her counterpart described above, but she is rich in relationships.  For her birthday this summer, she received 123 cards. 

The Greek model of elder care seems clearly a better choice. Americans could do this — without importation tariffs.

Human Fetal Tissue — Considerations

The NIH Human Fetal Tissue Research Ethics Advisory Board met on 31 July 2020 to “make recommendations regarding the ethics of research involving human fetal tissue (HFT) proposed in NIH grant and cooperative agreement applications and R&D contract proposals, as set forth in the NIH Guide Notice NOT-OD-19-128.” The meeting agenda included a brief time set aside for public comment. Additionally, written comment could be submitted within a prescribed time frame prior to the meeting.

It is my hope that the advisory board seriously considered the following comment penned by this writer, on behalf of the educational non-profit Tennessee Center for Bioethics & Culture:

All human beings belong to one another.  Whatever our genetic constitution, our ethnicity, our color, our femaleness or maleness, our geographic location, or stage of life:  we are part of the human family.   That membership is not bounded by a cradle-to-grave timeline.  As human mammals, our beginnings begin before the exodus from our mothers’ wombs.  From the fertilization of the egg by the sperm, a new human being arises (and sometimes, multiples).  How we treat that human zygote, embryo, fetus, newborn, baby, toddler, preschooler, child, adolescent, adult, and elder, has effects on that human being – as well as on ourselves.  How we treat other human beings, especially vulnerable ones, tells future generations and civilizations about what kind of people we are.

In 1993, President Bill Clinton signed into law the NIH Revitalization Act.  That Act charged the NIH to conduct or support research that reduced the number of animals used in research, and that produced less pain and distress in those animals (https://grants.nih.gov/grants/olaw/pl103-43.pdf). Those are laudable goals.  That same 1993 NIH Revitalization Act authorized the use of human fetuses for research, including fetuses from induced abortion (www.hhs.gov/ohrp/regulations-and-policy/guidance/public-law-103-43/index.html).  The same law that sought to reduce pain and suffering in animals opened the door wider to using nascent human beings as research subjects.  Utilizing tissue that becomes available by virtue of spontaneous abortion (miscarriage) does not actively convert living beings into research subjects/objects.  It is not a planned procedure that can be scheduled around tissue procurement firms.  That is not the case, however, with the use of fetal tissue from induced abortion.  The willful taking of tiny, live human beings from their mothers’ wombs, followed by the use of them in whole or in part, as research subjects/objects, sets up a human market.  Abortionists and abortion facilities are paid to render a living being into products or parts.  Then they are paid again to yield up these beings or parts to research.  Money is exchanged for parts or labor, even if said payment is labeled “handling charges.” This is a market, and it is a market in human flesh:  a stain upon our culture and our civilization.

Surreal Times

Happy Independence Day to all our readers! 

Vacation time for our family means spending some time at a cottage in a northern state, and often includes early July, which is the case this year.  It occasions a simpler life, punctuated with small town activities.  One of those activities has been the 4th of July parade.  Among the parade’s attractions (ostensibly for the children) is the candy thrown out from the emergency vehicles and floats driven by.  A few years ago, a local plumber added a new feature to the parade.  The central feature of their float was a port-a-potty, and the owner and employees threw out to the crowd not candy, but rolls of bathroom tissue.  Now in 2020, there was no small-town parade.  Instead, a flotilla of boats, led by the sheriff’s boat and siren, paraded in a clockwise direction around the lake.  The beautiful vintage wooden boats led the parade, and for the first time, modern boats were allowed to join. It was a bittersweet time:  a time of celebration yet a time of recognizing that much has been lost in our culture in recent months.  It was not mourning simply the fact that no one is dispensing free toilet paper to the gathered masses.

The toll of the novel coronavirus in our midst continues to mount.  Whether by illness or by death of one known to us, many in our nation have been affected.  New York has been particularly hard hit, with some seeds of that tragedy being planted only a few years ago.  I penned an article highlighting the timeline of the COVID-19 pandemic disaster in New York, especially regarding the elderly and it is available here.

In such a surreal time as we find ourselves, it seems fitting that I would receive the following prayer in an email today.  It was sent by an Anglican friend of mine, who has dual citizenship in the U.K. and the U.S.:

Collect for Independence Day

Lord God Almighty, in whose Name
the founders of this country won liberty
for themselves and for us,
and lit the torch of freedom for nations then unborn:
Grant that we and all the people of this land
may have grace to maintain our
liberties in righteousness and peace;
through Jesus Christ our Lord,
who lives and reigns with you and the Holy Spirit,
one God, for ever and ever. Amen.

Nursing Homes and Rights in New York

During a pandemic, some rights may be set aside for a time. Is that what happened to nursing home residents in New York?

Residents of nursing homes (NH) in the state of New York have specific rights spelled out on the NY Department of Health website. Regarding “Clinical Care and Treatment,” thirteen rights are listed. The webpage listing these rights was last revised in June 2010.

Fast-forward to June 2020.  As of 3 June 2020, there have been 6,068 confirmed or presumed COVID-19+ patients die in NY nursing homes.  Undoubtedly more patients from nursing homes have died of COVID-19 during the pandemic, but New York only includes in their tallies the number of people who die in the nursing home.  If nursing home residents die elsewhere of COVID-19, they are not counted as nursing home deaths.  On 10 May, Governor Cuomo told reporters, “We’ve tried everything to keep it out of a nursing home, but it’s virtually impossible. . .” What happened? 

On 25 March, less than three weeks after Governor Cuomo had declared a State disaster emergency due to the coronavirus pandemic, another statement was issued from the New York administration.  This one was sent from the New York State Department of Health to nursing home administrators, directors of nursing, and hospital discharge planners.  It was an advisory regarding “Hospital Discharges and Admissions to Nursing Homes,” and stated in part

 . . . No resident shall be denied re-admission or admission to the NH solely based on a confirmed or suspected diagnosis of COVID-19. NHs are prohibited from requiring a hospitalized resident who is determined medically stable to be tested for COVID-19 prior to admission or readmission.

Visitors to nursing homes had been locked out as of 12 March.  Then persons who were “medically stable”—including COVID-19+patients—were readmitted or admitted for the first time to the nursing homes.  Nursing homes were not allowed to require a test for coronavirus prior to admission/readmission.

So much for the rights of newly admitted or readmitted NY nursing home residents to

  • adequate and appropriate medical care, including nursing, rehabilitation therapies, social work, dental and other professional services for which you have been assessed to show need;
  • be fully informed by a doctor in a language or a form that you can understand (using an interpreter when necessary) of your total health status, including but not limited to your medical condition including diagnosis, prognosis and treatment plan;
  • ask questions about your medical condition and have the questions answered;

What about the residents in whose midst COVID-19+ patients were admitted or readmitted?  What about their rights to

  • refuse to participate in experimental research;
  • be fully informed in advance about care and treatment and of any changes in that care or treatment that may affect your well-being;
  • participate in planning your care and treatment or changes in your care and treatment

Does re/admitting persons with a virulent infectious disease into a closed environment of vulnerable people  equate to experimental research?  These were certainly changes in their environments that could affect their well-being.  How could nursing home residents “participate” in their care or treatment under such circumstances?

What happened to these rights during the response to the pandemic? Did the State give these rights to the nursing home residents, and therefore, could the State take them away?  No one envies the weight of the burden of the pandemic on the citizens, the health care system, or the elected and appointed governing officials of New York.  Choices made, however, have consequences, and some people live with those consequences.  Others don’t.

Causes of Death Coding in COVID-19 Pandemic

Reporting causes of death is an important function in our society, and involves a number of people in completing each death certificate:

  • Pronouncer of death – may be a physician
  • Certifier of death – usually a physician; assigns cause of death
  • Funeral director – completes the demographic information, next of kin, and burial information portions of the death certificate
  • Local registrar or health department – registers the death certificate, and has long term management responsibility of same

The Office of Vital Statistics performs statistical analysis and reports on the mortality data, which are used in many ways, including surveillance of diseases, tracking of national deaths in emergencies and pandemics, and to justify health spending. Any misinformation along the way will impact not only the individual death certificate, but also all the data that includes that death certificate.

Death certificates are legal records. The physician as certifier of death “determines and accurately records the sequence of medical conditions that resulted in death. When the physician signs the certificate, he or she has legally certified that, to the best of his or her knowledge, the individual died for the reasons listed under the cause of death.” (CDC online course on “Improving Cause of Death Reporting (Web Based),” WB2959)

The Cause of Death (COD) portion of the death certificate entails two main sections. Part Ia is where the immediate cause of death is listed, and subsections Ib, Ic, and Id detail the sequence of events, listed backwards in time, that culminated in the proximate cause of death. Any other diseases or conditions that may have contributed to the person’s demise are listed in Part II.   The COD is the important part of the death certificate as far as vital statistics are concerned. The use of “suspected,” “probable,” or “possible” has been previously discouraged in the listed COD on death certificates. In fact, the above-referenced course currently offered by the CDC does not include such possibilities.

But that has changed with the COVID-19 pandemic. The World Health Organization issued its International Guidelines for Certification and Classification (Coding) of COVID-19 as Cause of Death on 20 April 2020.  They declared, “A death due to COVID-19 is defined for surveillance purposes as a death resulting from a clinically compatible illness . . .” New ICD-10 codes have been developed. For cases in which the virus has been identified, the code is U07.1; and when it has not been identified, but COVID-19 is “probable” or “suspected,” the code is U07.2. (p. 8/14).

The CDC’s National Vital Statistics, likewise, published new “Guidance for Certifying Deaths Due to Coronavirus Disease 2019 (COVID-19)” in April.  They indicated that the Underlying Cause of Death (UCOD) “should be reported on the lowest line used in Part I” of the death certificate. Although the document encourages testing if possible, the completion of a death certificate does not require it:

In cases where a definite diagnosis of COVID–19 cannot be made, but it is suspected or likely (e.g., the circumstances are compelling within a   reasonable degree of certainty), it is acceptable to report COVID–19 on a  death certificate as “probable” or “presumed.”

The advice goes further, to say that if COVID-19 is involved, “it is likely the UCOD and thus, it should be reported on the lowest line used in Part I of the death certificate.”

What are the ramifications of such changes to death certificates?

  •  Possibly inflated COVID-19 death counts
  •  Perhaps (unfairly) increased federal aid to areas with inflated COVID-19 deaths
  •  Under-reporting of other causes of death, and resulting lack of attention to  appropriate health concerns
  •  Loss of veracity in the persons responsible for completing the death certificates       
  •  Loss of trust in a system that has been manipulated

None of these is desirable, and all will cost us in the end.

 

Love in a Time of Pandemic

Last month’s story of Italian priest Don Giuseppe Berardelli giving up his ventilator so a younger patient could use it was an attention-grabber. The truth of the matter was a bit different, but the end result was, somewhat predictably, unchanged. Berardelli did refuse a ventilator, due to medical reasons. At the hospital, sometime in the night of March 15-16, the beloved, jovial, and accessible 72-year-old priest died from the coronavirus. He was one of at least 60 priests who succumbed to the SARS-CoV-2 virus during one month in Italy.

Physicians and dentists in Italy who have lost their lives to the coronavirus are listed here. In a similar vein, Medscape Medical News is maintaining (and adding to) a list, “In Memoriam: Healthcare Workers Who Have Died of COVID-19.” These are not the only victims, however. The frontlines are multitudinous, from people who work as clerks or deliverers of goods, to first responders, to all those caring for the ill (personally or professionally). These are exposed to increased risk of contracting the virus, and possibly dying from it. But these are not the first, nor will they be the last, to incur risk in such a manner.

History has much to teach us about staying at one’s post in difficult times. One of the prime examples is Martin Luther, who stayed in Wittenberg in 1527, in the midst of a bubonic plague outbreak. In response to multiple queries, he wrote a tract, “Whether One May Flee from a Deadly Plague.” His conclusion was that, unless someone can accomplish your duties in your absence, your presence is required.

  • Preachers and pastors: “For when people are dying, they most need a spiritual ministry which strengthens and comforts their consciences by word and sacrament and in faith overcomes death.”
  • Mayors and judges: “To abandon an entire community which one has been called to govern and to leave it without official or government, exposed to all kinds of danger such as fires, murder, riots, and every imaginable disaster is a great sin.”
  • Public servants like city physicians and city clerks: These “should not flee unless they furnish capable substitutes who are acceptable to their employer.”

Citing Matthew 7:12, Luther concluded that “we are bound to each other in such a way that no one may forsake the other in his distress but is obliged to assist and help him as he himself would like to be helped.”

Luther did not neglect the complementary side of the issue: prudent care of our bodies. He wrote, “I am of the opinion that all the epidemics, like any plague, are spread among the people by evil spirits who poison the air or exhale a pestilential breath which puts a deadly poison into the flesh.” Therefore, Luther recommended that one keep one’s distance from those ill (if they did not require help), set up hospitals to care for the sick, “help purify the air, administer medicine, and take it.” Luther, like the priests and health care professionals referenced above, provides a strong example of love in a time of pandemic.

Assisting Suicide — for Everyone — in Germany

In what is manifestly a case of legal and verbal gymnastics, the Federal Constitutional Court of Germany has “found” a right to suicide. The Court announced its finding in a press release, dated 26 February: “Criminalisation of assisted suicide services unconstitutional.”  Calling self-killing, or suicide, “an act of autonomous self-determination,” the Court grounded suicide – and assisting suicide – in human dignity. Here is what they proclaimed: “Inalienable human dignity accordingly requires that any human being be unconditionally recognised as an individual with personal autonomy.”

Further, the Court wrote

Maintaining one’s personality in self-determination requires that the             individual can control their life on their own terms and is not forced into     ways of living that are fundamentally irreconcilable with their ideas of self    and personal identity. In terms of human personality, the decision to end      one’s own life is of the most fundamental significance to one’s existence. For  the individual, the purpose of life, and whether and for what reasons they        might consider ending their own life, is subject to highly personal beliefs and  convictions. The decision to commit suicide concerns basic questions of   human existence and bears on the identity and individuality of that person like no other decision. Therefore, the right to a self-determined death is not   limited to the right to refuse, of one’s own free will, life-sustaining          treatments. It also extends to cases where the individual decides to actively   take their own life.

This right to suicide does not depend upon “serious or incurable illness” or stage of life. Indeed, “this right is guaranteed in all stages of a person’s existence.” The right to suicide cannot be denied based on the argument that suicide forfeits one’s dignity. Actually, the Court decided, “the individual knowledge of actually being able to act according to one’s own wishes is in itself a crucial element of asserting one’s identity.” Additionally, “(t)hird parties must also legally be allowed to act in accordance with their willingness to render suicide assistance.”  Finally, the Court opined, “there can never be an obligation, on anyone, to assist in another person’s suicide.”  (See English translation of the Court’s press release here.)

Dies ist eine Dose Würmer! (Translation: This is a can of worms!). A right to suicide gives an incredible bargaining chip to every citizen. Imagine this new power in every relationship. If a teenager does not get his/her way, s(he) can threaten, “Do this, or I will kill myself.” Any spouse or lover could likewise gain the upper hand by such a threat.

There are other concerns as well.  Can a person who has survived a suicide attempt be treated by medical staff in order to repair the damage done to him/herself? Can someone judged to be a possible harm to him/herself be involuntarily committed to a psychiatric institution? Can such a patient even be treated?

Then there are the “assistors.” Who will be “qualified”? Will they need a license?  Although physicians are not required to assist now, will that always be the case? How will the prescriptions be obtained? Will pharmacists eventually be compelled to participate? How much can one charge for assisting suicide?   Since this case was brought before the Court by those who wish to assist suicides, one must wonder about the amounts of money involved and what the flow of it will look like.

But these could be understood to be “mere administrative details,” and in a certain sense, they are. The more worrisome – much more worrisome – issue is the fact that others are being co-opted into becoming killers.

Let’s face some inconvenient truths. Suicide has always been an available option, albeit treated differently in law over time. Suicide destroys a person and violates his/her dignity. It doesn’t forfeit one’s dignity – it forfeits one’s life. And it impacts the lives of family members, often for generations. These effects are difficult enough, but the Federal Constitutional Court of Germany has gone much further. They have legalized the assisting of suicides – for all people, for whatever reasons.

Legalizing the assisting of suicides means co-opting others in the act of suicide. Where is the autonomy in that? The act of killing, whether of birds, deer, cows, or human beings, registers effects in the human psyche (soul) of the killer. In the case of killing animals for food, most consider it an “acceptable adjustment.” Yet if we observe someone killing too easily, or with too little regard for the life of the animal being killed, we worry. Particularly do we worry if the killer is young. What is being – or has already been – done to the psyche (soul) of that person? Is the psyche (soul) malformed? Participation in the act of killing a human being is not just about the one being killed, but also about the one being transformed into a killer. One will be dead; the other will have experienced killing. What has happened to his/her human dignity? Does assisting suicide violate the participant’s human dignity, regardless of how compassionate he/she may feel? How could it not?

Justified Quarantine?

The 2019 novel coronavirus (2019-nCoV) is a force to be reckoned with, despite its unclear origins (see here and here).  From Wuhan, China, the virus has spread to all of the Chinese provinces, and, by 31 January, eighteen other countries.  By 30 January, the World Health Organization (WHO) had declared the situation a public health emergency of international concern (PHEIC).  

The Centers for Disease Control and Prevention (CDC) reported on 31 January that four states—Arizona, California, Illinois, and Washington—have a total of six known cases of persons infected with corona virus. In addition, 36 states have patients under investigation for the infection.  Citing the approximately 10,000 confirmed cases of the virus in China, and evidence of person-to-person spread of the infection, the White House announced on 31 January the suspension of entry into the U.S. of persons posing a risk of transmitting the virus. One point of that announcement concerned quarantine: 

Sec. 4.  Orderly Medical Screening and Quarantine.   The Secretary of Homeland Security shall take all necessary and appropriate steps to regulate  the travel of persons and aircraft to the United States to facilitate the orderly  medical screening and, where appropriate, quarantine of persons who enter   the United States and who may have been exposed to the virus.  Such steps may include directing air carriers to restrict and regulate the boarding of     such passengers on flights to the United States.

The U.S. is not the only nation planning or implementing quarantine. China has already moved to at least partially quarantine persons in Wuhan.  According to the BBC, the UK, South Korea, Singapore, and New Zealand will quarantine evacuees from Wuhan for two weeks. Australia will similarly quarantine their evacuees on Christmas Island.  

In light of the evolving situation with 2019-nCoV, it is a good time to review some definitions and recommendations from the public health arena:  

Isolation separates sick people with a contagious disease from people who are not sick.

Quarantine separates and restricts the movement of people who were exposed to a contagious disease to see if they become sick.

The essence of quarantine is the restriction of movement of individuals, imposed by an authority, for some length of time. “Quarantine” has been attributed to the Venetians, who, in their effort to stem the spread of the Black Death, required ships “to lay at anchor for forty days” prior to landing.  In the U.S., the National Quarantine Act was passed in 1878 in an attempt to avert the spread of Yellow Fever. A national quarantine system was enacted by Congress in 1893. Fast-forward to 1983, when Executive Order 12452 was issued by President Reagan:

Section 1. Based upon the recommendation of the National Advisory Health   Council and the Assistant Secretary for Health of the Department of Health and Human Services, and for the purposes of specifying certain communicable diseases for regulations providing for the apprehension, detention, or conditional release of individuals to prevent the introduction, transmission, or spread of communicable diseases, the following named communicable diseases are hereby specified pursuant to Section 264(b) of   Title 42 of the United States Code: Cholera or suspected Cholera, Diphtheria, infectious Tuberculosis, Plague, suspected Smallpox, Yellow Fever, and           suspected Viral Hemorrhagic Fevers (Lassa, Marburg, Ebola, Congo-Crimean,   and others not yet isolated or named).

Does quarantine constitute “an unwarranted diminution of personal liberty”? Ross Upshur, M.D., M.A., M.Sc, who is also a Hastings Center Fellow, deals with this question and more in a 2003 article in the AMA Journal of Ethics.  He cites two goals achieved by quarantine: stopping the chain of transmission of infection, and allowing “individuals under surveillance to be identified and directed toward appropriate care if they become symptomatic.”  Additionally, Upshur describes four principles that must be met for quarantine (or other autonomy-limiting steps) to be considered:

  1. The general principle of preventing harm: particularly, this would include prevention of person-to-person spread of the infection
  2. The “proportionality, or least-restrictive-means principle”: quarantine should          be voluntary “before mandatory orders or surveillance devices, home cameras, bracelets, or incarceration are contemplated”
  3. Reciprocity: if persons are quarantined, they should be provided with “adequate food and shelter and psychological support . . . They should suffer no penalty on account of discharging their obligations to society.”
  4. Transparency: “(P)ublic health authorities have an obligation to communicate clearly the justification for their actions and allow for a process of appeal. (See full article here.)

If all of these criteria can be met—no small order—Upshur writes that quarantine is justified.

2020, or 20/20?

Near the end of 2018, He Jiankui was on the world’s stage announcing that he had edited the genome of twin girls, in the hope of making them resistant to HIV. On Tuesday, December 31, 2019, the Wall Street Journal (WSJ) printed a report that Dr. He and two others have been convicted of “illegally practicing medicine related to carrying out human-embryo gene-editing intended for reproduction.” (online version here).

A court in Shenzhen concluded that the defendants had acted for “fame and profit,” when they “deliberately violated the relevant national regulations, and crossed the bottom lines of scientific and medical ethics.” For the crime committed, He received the most severe sentence. In addition to the three-year prison sentence, He is banned for life from “working in the field of reproductive life sciences and from applying for related research grants, “ according to the WSJ.

The Xinhua News Agency also noted that a third genome-edited baby had been born, and that this child, along with the previously born twins, “would be monitored by government health departments.” The WSJ did not state for how long the monitoring would continue. Not only were the children experimental subjects as embryos, but they continue to be subjects as well. Further, these genome effects will affect their progeny, potentially into perpetuity. Additionally, the Smithsonian Magazine reports that in the summer of 2019, He met with “investors to discuss a potential commercial genetic modification clinic in Hainan, which aims to become a ‘world-class medical tourism hub’.”  One might reasonably call this “a crime against humanity,” even if it does not include genocide of humans already born. (For further reading, see David Luban, “A Theory of Crimes Against Humanity”)

In the print edition of the WSJ, alongside the article on He is an article about Pastor Wang Yi of the Early Rain Covenant Church. Pastor Wang was sentenced on 30 December to nine years in prison. His crime was “incitement of subversion of state power and illegal business operations” (online article here).

Consider that a pastor receives a nine-year sentence for an offense against the State; and a scientist, a sentence of three years for a crime against multiple generations, and indeed, humanity. In the year 2020, we could use a check of our understanding of what is important in the life of the world. Would that our vision were 20/20 also.