2019: Endocrine Ethics Biggest Story

January 3, 2020 • By

2019 marked a number of 50th anniversaries in the field of bioethics. Two of the biggest bioethics anniversaries included the 50th anniversary of Elizabeth Kubler-Ross’ On Death and Dying, which laid the groundwork for all end of life discussions and care delivered today (see: https://www.tandfonline.com/eprint/UYRGE3RPJPEKCDNHSIET/full?target=10.1080/15265161.2019.1674410)

Another major 50th anniversary was the founding of The Hastings Center (see: https://www.thehastingscenter.org/who-we-are/), which was the first bioethics think tank that began to publish and articulate important concepts for bioethics, and eventually led the field into various subspecializations, such as transplant ethics, research ethics or pediatric ethics – in which practitioners and scholars began to formulate applied ethical frameworks for particular fields. Similarly, Endocrine Ethics is a new subspecialization (see further).

The American Journal of Bioethics listed the top 10 bioethics stories of the years here (see: http://www.bioethics.net/2019/12/top-ten-bioethics-stories-of-2019/), many of which directly affect the practice of endocrinology, including the sweeping abortion restrictions that are now affecting the practice of reproductive endocrinologists who may have to rethink more preventative strategies, such as aggressive counseling about hormonal contraception, and creating greater restrictions regarding fertility treatment and the creation of high risk pregnancies that may not be allowed to be terminated in multiple states. The American Society of Reproductive Medicine strongly opposes so-called “personhood” laws that frame these new restrictions (see: https://www.asrm.org/about-us/media-and-public-affairs/public-affairs/asrm-position-statement-on-personhood-measures/).

Notwithstanding, the biggest Endocrine Ethics story of the year is also its oldest – access to insulin.The New England Journal of Medicine covered this story in November 2019 (see: https://www.nejm.org/doi/full/10.1056/NEJMp1909402), which is really more about the failings of the American healthcare system (which practices “healthism” and “wealthcare”) than it is about a diabetes crisis. The crisis is from the high cost of insulin leading to the rationing of insulin, which has put thousands of insulin-dependent diabetes patients at risk of dying from a disease we’ve been able to treat since 1921. In fact, access to insulin was one of the first uniquely endocrine ethics issues that emerged in the 20th century, and it seems we’ve come full circle. The precedent set by the co-discoverers of insulin (a wild research ethics story in its own right) of making insulin widely accessible by selling the patent for $1 to the University of Toronto,  led to widespread accessibility of other wonder drugs years later, including the polio vaccine.

Other endocrine ethics stories dominating the news include the continuing controversies over treating well-differentiated thyroid cancers and Graves’ disease and a concerning spread of disinformation surrounding so-called “risks” of radioactive iodine that are unsubstantiated (see, for example: http://am2016.aace.com/presentations/thursday/T22%20&%20T53/ain_radioiodine_remnant_%20ablation.pdf). This has led to disparate standards of care, and many seasoned thyroidologists’ warning of the coming tsunami of patients who will present with iodine non-avid thyroid cancers because of the withholding of the standard of care. 

Finally — as you can see, Endocrine Ethics Blog was a little less active in 2019 than in previous years, but that’s because one of the biggest Endocrine Ethics stories this year involved me: I founded in October 2019, along with three other colleagues, the first professional society for endocrine ethics issues: The Endocrine Ethics Association (see: www.endocrineethics.org). You will hear more about this organization in conjunction with this year’s Endocrine Society Meeting in March 2020. 

In 2020, here’s to solving the insulin crisis so that thousands of insulin-dependent diabetes patients can see clearly for as long as possible. 

Reproductive Endocrinology

Reproductive Rights in the Fetal Position

May 31, 2019 • By

This month, the most restrictive abortion ban in American history, known as the Human Life Protection Act, was passed in Alabama, which has led to a tsunami of similar laws throughout the South and mid-west (see:  https://www.nytimes.com/2019/05/15/us/abortion-laws-2019.html?module=inline. Missouri also passed a controversial bill this month that bans abortion beyond 8 weeks (see: https://www.nytimes.com/2019/05/24/us/missouri-abortion-law.html).

The Alabama law makes it a crime for doctors to perform abortions at any stage of a pregnancy unless a woman’s life is threatened or there is a lethal fetal anomaly (see: https://www.al.com/news/2019/05/alabama-abortion-ban-passes-read-the-bill.html). Doctors in Alabama who violate the new law may be imprisoned up to 99 years if convicted, but the woman seeking or having an abortion would not be held criminally liable. Thus, Alabama’s law severely punishes healthcare providers for terminating pregnancies for any reason unless the patient’s life is threatened, effectively forcing them into wrenching ethical dilemmas and moral distress, and upending common practices in fertility treatment care. The law – which is unethical, clearly violating the Principle of Respect for Autonomy — has effectively left reproductive healthcare in the “fetal position” as such a law will make abortion in Alabama in 2020 – in post-Roe America more restrictive than it was in 1920 – in pre-Roe America. The American Society for Reproductive Medicine has made clear that it opposes the Alabama fetal “personhood” law (see: https://www.asrm.org/about-us/media-and-public-affairs/public-affairs/asrm-position-statement-on-personhood-measures/ ).

Even in pre-Roe America, when abortion was illegal by the mid-19th century, it was always legal for physicians to perform a therapeutic abortion. The definition of “therapeutic abortion” was never clearly defined and was always left up to medical judgement to define. Typically, psychological and psychosocial harms from an unwanted pregnancy would be frequently considered. Between the 1920s and late 1930s, women could access safe abortions from a number of physicians in urban centers.  Even later in pre-Roe America (1940s-1973) when abortions became more restrictive and cost-prohibitive, hospitals had therapeutic abortion committees that took psychological and psychosocial harms from an unwanted pregnancy into consideration. 

In my own state of Kentucky, abortion was effectively banned in March through two bills: one bill prohibits abortion after six weeks (most women don’t discover they are pregnant prior to six weeks); the other bill prohibits abortion if it’s related to results of fetal diagnosis. The ACLU challenged both laws shortly after passage in federal court arguing it is unconstitutional (See: https://www.aclu.org/blog/reproductive-freedom/abortion/kentucky-just-banned-abortion?fbclid=IwAR17UypgeafdMW-_mYCgPxpt1RkalH1y-xGhJJkjgWQgAs7yu99VxnwtPGA). On March 27, 2019 a judge ordered the laws be suspended indefinitely until the court issues a final ruling on whether they are constitutional. 

But the Alabama law is the new crystal ball for the future of abortion in the U.S. It’s clear that Roe v. Wade has become irrelevant in a post-Casey America. In the 1992 Casey decision, the court clarified that the states could place restrictions on abortion previability so long as it was not an “undue burden”, which led to Targeted Restrictions for Abortion Providers, or TRAP laws.

It is likely that by 2024, the country will be divided into a reproductive justice system of “free states” and “TRAP states” – where poor women are enslaved by their biology, as well as lack of access to hormonal contraception. We all know that abortion access is never a problem for the wealthy and well-connected who can travel out of state or to another country.  Unwanted pregnancy is not just about the consequences of unprotected sex, but of classism and health disparities.

This year is the 50th anniversary of Norma McCorvey’s quest for an abortion in Texas when she was 21, when roughly 10,000 women per year in the U.S. were dying from unsafe abortions. She went to attorneys Linda Coffee and Sarah Weddington, who renamed her “Jane Roe”, and challenged the Dallas District Attorney, Henry Wade. The following year, in 1970, the District court ruled in favor of Roe, stating the Texas law was unconstitutional, but wouldn’t grant an injunction against the law; this eventually led to the Supreme Court decision of Roe v. Wade. By then, Norma had already given birth and put the baby up for adoption. 50 years later we’ve come full circle.

Thyroid Cancer

The European Nuclear Reaction: Practitioners Rebuke Problematic Thyroid Cancer Guidelines

January 31, 2019 • By

A “Special Article”, recently published in THYROID, tells the story of what happens when unsubstantiated clinical practice guidelines for thyroid cancer are promoted as optimal care. 

When the most recent revised thyroid nodule and thyroid cancer clinical practice guidelines were published by the ATA in 2015 (see: https://www.liebertpub.com/doi/pdf/10.1089/thy.2015.0020), the document remained at odds with the scientific consensus over the state of knowledge and previous standards of care. These guidelines made several sweeping recommendations without sufficient scientific or ethical justification (See: https://www.futuremedicine.com/doi/abs/10.2217/ije-2015-0010 and https://www.futuremedicine.com/doi/abs/10.2217/ije-2017-0008). The document also disclosed overt financial conflicts of interests by several of the authors, raising questions about whether some recommendations were influenced by authors’ industry ties. The fallout within the community of experts led to considerable moral distress amongst dissenting practitioners who felt they had beneficence-based duties to treat, but whose voices were marginalized. Indeed, thyroid cancer content presented at conferences in the post-2015 guideline years basically regurgitated the Haugen et al. (2015) recommendations as though they were partisan talking points. 

The most questionable departure from traditional thyroid oncology practice were recommendations against the diagnostic or therapeutic use of radioactive iodine, as well as recommendations against total thyroidectomy in patients whose tumors were as large as 4 cm – what some surgeons and thyroid oncologists would consider egregious. The guidelines also encouraged observation of “low risk” tumors (although I have argued elsewhere that such practice should be regarded as experimental, and violates the Belmont Report if it is not presented in a research context). No treatment, undertreatment and questionable disclosure to patients became the new paradigm in thyroid cancer care. Many of the recommendations were based on pet theories and biases of some of the authors, relying on highly flawed or ethically questionable studies to support them.  Of note, the nuclear medicine community refused to endorse the guidelines, which was unprecedented.

This month, in a stunning rebuke by Luster et al. entitled “European Perspective on 2015 ATA Management Guidelines for Adult patients with thyroid Nodules and DTC”, European experts called for revisions to approximately one-thirdof the ATA’s 101 recommendations in its 2015 document. (See: https://www.liebertpub.com/doi/abs/10.1089/thy.2017.0129.)

They stated the following in their abstract:

“Divergent viewpoints were the focus of an invited symposium organized by the European Association of Nuclear Medicine involving 17 European thyroidologists, four ATA Guidelines Taskforce members, and an audience of 200 international experts. The group discussed the preoperative assessment of thyroid nodules, surgery and the role of pathology, radioiodine (RAI) therapy (RAIT), the assessment of initial therapy and dynamic risk stratification, and the treatment of persistent disease, recurrences, and advanced thyroid cancer. The dialogue resulted in this position paper contrasting European and ATA 2015 perspectives on key issues. One difference pertains to the permissiveness of ATA 2015 regarding lobectomy for primary tumors ≤4 cm. European panelists cited preclusion of RAIT, potential need for completion thyroidectomy, frequent inability to avoid chronic thyroid hormone replacement, and limitations of supportive evidence as arguments against widely applying lobectomy. Significant divergence involved ATA 2015’s guidance regarding RAIT. European panelists favored wider use of postoperative RAIT than does ATA 2015. …European panelists suggested modifications to approximately one-third of ATA 2015 recommendations.” 

Facts can be a stubborn thing.  

Reproductive Endocrinology

He Says/We Said: The Bioethics Community’s Response to the CRISPR Babies

December 31, 2018 • By

The biggest bioethics story of the year, topping off the 200thanniversary of the publication of Frankenstein (see: https://frankenstein2018.com) was the announcement by Dr. He Jiankui on November 25ththat he had just created the world’s first genetically modified babies using the gene editing tool known as CRISPR cas9.  He announced this at the 2ndinternational gene summit (see: http://www.nationalacademies.org/gene-editing/2nd_summit/index.htm); the story officially broke in MIT Technology Review (see: https://www.technologyreview.com/s/612458/exclusive-chinese-scientists-are-creating-crispr-babies/).

I also discussed this case earlier this month on a University of Kentucky podcast (http://uknow.uky.edu/research/ethics-crispr-twins-week-behind-blue)

What did He do?

Dr. He claims to have eliminated the gene that makes us susceptible to HIV in an effort to create HIV-resistant babies since the father is HIV-positive. (The gene is called CCR5). He also claims to have created another pregnancy which is still in the early stages.

This was a staggering announcement because it means Dr. He reportedly edited human embryos that were implanted back into the mother. This is called human germline editing – also known as human germline engineering. Human germline editing involves changing the DNA of sperm, eggs or embryos – which is passed down through generations, and which have unknown consequences to the human genome overall. Essentially, Dr. He may have changed the human DNA sequence for generations to come by creating a heritable mutation and genetically modified descendants. The babies in question are called Lulu and Nana (pseudonyms); when they grow up and have children of their own, they will pass on this changed DNA sequence to their children, who will pass it on their grandchildren. This could affect untold thousands of people in the future. Nobody knows the consequences of the mutation Dr. He has introduced – it could have altered the genome in significant and negative ways.

Scientific concerns

 Several scientific peers have raised serious questions:

  • He has not published his data for scientific scrutiny. Nobody can verify what, exactly, he did, or if he is telling the truth.
  • This was conducted without IRB approval, ethical oversight or informed consent. Dr. He’s institution –Southern University of Science and Technology, in Shenzhenhad no knowledge of his work; the hospital where the embryos were implanted and eventually born states it had no knowledge of what he was doing (see: http://asia.blob.euroland.com/press-releases-attachments/1108747/HKEX-EPS_20181127_003332422-0.PDF)
  • It will be difficult to get this research published in a peer reviewed journal because it doesn’t meet the publication standard of IRB-approval. There are also several conflicts of interest in his research.
  • There appears to be no scientific or clinical rationale for this particular gene edit because there are many ways to reduce HIV transmission in newborns, and HIV experts stated that these babies were at very low risk of contracting HIV in the first place. This trial did not even meet the standard of “unmet medical need”. So even if these girls remain HIV negative life long, we’ll never know if this apparent gene edit was responsible. Dr. He actually introduced new mutations into the babies’ genomes that could alter how CCR5 works. We just don’t know.

Ethical concerns

Ultimately, every bioethicist around the world has called this research completely unethical, including over 100 Chinese scientists who have stepped forward. Dr. He also violated an international moratorium on creating live births with human germline editing. In December 2015, the first international summit on gene editing took place in which the scientific community agreed that while research on human germline editing could be done on discarded embryos– so we could study and learn more about this — it could not be used to create live births because it was years away from practical application. In fact, I discussed this moratorium in December 2015 (see: http://endocrineethicsblog.org/editing-ourselves-2015-and-crispr/).

Creating live births using germline editing is illegal in several countries, including the UK and Canada. China has now declared this illegal, too. In the U.S., federal funds cannot be used for intentionally creating a human embryo that is edited or modified.

The bioethics consensus is that until sufficient public debate surrounding the ELSI consequences  – the ethical, legal and social implications  — of human germline editing takes place, this research is not only premature, but may not even be an acceptable scientific pursuit.

In a year where ethics violations in government without “checks and balances” have dominated the news, it seems the science news was no exception. The CRISPR twin research violated the Nuremberg Code, the Declaration of Helsinki and the Belmont Report.

Although some bioethicists question if we should respond to what “He Says” in the absence of any data, if someone is even claiming to have altered the human genome, science must provide a strong and swift rebuke. Because the last thing we want is (ahem) a copycat.


John McCain’s Advance Directive

September 3, 2018 • By

This month started out with a remarkable advance directive on display: John McCain’s funeral, which he meticulously planned and choreographed. Bioethicists frequently recommend that patients and their families fill out advance directives to guide end of life care. But an important part of death and dying is the closure that comes with marking a death: burial and ritual. How typical is it for those at the end of life to plan their funerals? Well, funeral directives are becoming more common, and there are different state laws surrounding how much control you have over your funeral in every state. In the State of Arizona, laws surrounding self-directed funerals are very specific, and John McCain surely was familiar with them. In Arizona there are legal protections that ensure you can control your burial and and funeral proceedings. (See: https://funerals.org/?consumers=legal-right-make-decisions-funeral).

John McCain’s beautiful funeral was a unique example of how end of life wishes are not completed with one’s last breath; Senator McCain was able to speak to the country directly through surrogate voices that clearly knew his values, wishes and preferences.  Aside from his tragic illness and death from glioblastoma – passing on the 9thanniversary of Senator Ted Kennedy from the same illness – we knew that John McCain had moral distress over what he must have viewed as a growingly mean-spirited country and congress  that was becoming crippled. John McCain’s advance directive was intended to remind the country about moral community and moral leadership. Remarkably, he clarified in his arrangements that a sitting President of the United States was not invited, and not be allowed to speak on his behalf. Instead, he chose the last two Presidents of the United States, indicating that he does not recognize the sitting President in that same role. By doing so, John McCain gave the country something it hasn’t had in a long time: a day of silence from vitriol, and a day to remember what moral leaders supposed to look like. He openly shamed his Republican colleagues in Congress by forcing them to listen to voices of reason, but more importantly, to rejoin the moral community.

John McCain’s funeral can be used as an example in end of life discourse that crucial conversations and closure can still go on, and patients can still control what happens and what is said in their name. The “Who Will Come to my Funeral” scenarios that often occur when patients are confronted with life-threatening illnesses can also be about “Who should NOT Attend my funeral”.  Undoubtedly, Senator McCain envisioned that his passing would prompt a national mourning befitting of a Presidential Eulogy. Once he considered that, he took control of which Presidents would deliver his eulogies. In the end, it was his daughter who said it best: “John McCain was not defined by prison, by the navy, by the senate, by the Republican party or by any single one of the deeds in his absolutely extraordinary life. John McCain was defined by love.”

Based on the coverage and analysis of his funeral, it seems the country heard his voice loud and clear:





Endocrine Research

The Declaration of Helsinki and What Happened July 16, 2018

July 20, 2018 • By

This month, everyone has started talking about the “declaration” of Helsinki — surprising remarks made on July 16, 2018 by President Trump at his recent historic summit in Helsinki. But before this month, the only professionals who talked frequently about the Declaration of Helsinki, were those involved in biomedical research. That’s because the Declaration of Helsinki refers to the World Medical Association’s ethics guidelines for medical research with human subjects, originally published in 1964 (See: https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/). It is this document that established the need for Institutional/Ethical Review Boards (in its 1975 revision) for research protocol oversight. It’s been revised several times since 1975.

Prior to the Declaration of Helsinki, the only other guiding international document for research ethics with human subjects was the Nuremberg Code, created in 1947 (See: https://history.nih.gov/research/downloads/nuremberg.pdf).

The Declaration of Helsinki largely echoed the Nuremberg Code, but helped to define distinctions between therapeutic and nontherapeutic clinical research. It was first announced on July 18, 1964 in the British Medical Journal, and just had its 54thbirthday this month.

On July 16, 2018 – yes, the same day as that Helsinki summit — another shocking event took place in the U.S. that should concern the World Medical Association. The U.S. Department of Health and Human Services eliminated years of medical knowledge by removing a critical website that housed hundreds of clinical practice guidelines. (See: https://www.msn.com/en-us/news/us/hhs-plans-to-delete-20-years-of-critical-medical-guidelines-next-week/ar-AAzXUJC?ocid=se).  That means all of the clinical practice guidelines you rely on, and used to be able to get at the URL www.ahrq.gov/gam are now gone. Many of the guidelines published by the Endocrine Society or the American Thyroid Association –  intended for a range of primary care practitioners or other specialists — are no longer readily available through the National Guideline Clearinghouse, known for housing bias-free clinical practice guidelines. The National Guideline clearinghouse was created in the 1990s to help ensure that evidence-based medicine was more accessible to the practitioner. The clearinghouse practice guidelines database was maintained by the Agency for Healthcare Research and Quality (AHRQ), on its “Guidelines and Measures” site. Now when you go there, you’ll get the sad message: “Funding to support AHRQ’s National Guideline Clearinghouse (NGC) ended on July 16, 2018.”

The New York Times had this to say:

“The sheer volume of medical information now within a few clicks’ reach can make it difficult, even for doctors, to separate wheat from chaff. Clinical guidelines based on careful consideration and solid impartial research can be difficult to tell apart from those based on weak data, or rooted in a clear conflict of interest (usually a financial stake in whatever treatment they are promoting). The clearinghouse, which not only vets countless sources of medical information but also makes its results easily searchable, is regarded as the most dependable repository of its kind in the world… On [July 16, 2018], the Department of Health and Human Services took it offline, the latest casualty in an administration determined to eliminate science from the government’s agenda….The official explanation is maddening enough: a budget shortfall that roughly equals the amount Tom Price  spent on travel during his brief tenure as department secretary. The site costs just $1.2 million a year to operate, and is maintained by an agency with a budget of more than $300 million. (See:https://www.nytimes.com/2018/07/19/opinion/trump-medicine-data-hhs-ahrq.html)

The World Medical Association’s Declaration of Helsinki was groundbreaking in 1964. It would be a natural extension of this body to take up the task of housing not just the U.S. database of clinical practice guidelines discarded this month by the Trump Administration, but the world’s medical association guidelines so that they are never again vulnerable to the whims of politicians.


Pediatric Endocrinology

Stress Hormones and Children: An American Pediatric Ethics Catastrophe

June 27, 2018 • By

The biggest bioethics story this month, and likely the Summer of 2018, involves the physical and emotional trauma being inflicted on children at the U.S. border as a result of a Trump Administration policy of child separations at the border. This was a new policy in which the children of asylum seekers arriving at the U.S. border were being removed from their parent(s), and sent to U.S.-created internment sites that are run by HHS, while the parent is held in custody awaiting either deportation or an immigration hearing. Although these child internment sites have been described in reports as “humanely run,” since the policy of separating children from their parents is not humane, the moral harms are self-evident. Notwithstanding, there have been reports by that conditions are unacceptable and alarming. (See: https://news.sky.com/story/hundreds-of-lone-children-kept-in-cages-in-us-border-patrol-prison-11408321.) 

Whistleblowers have also made some material available for the public interest, including an audio recording released by ProPublica that demonstrates the emotional trauma of the separated children: (See: https://www.propublica.org/article/children-separated-from-parents-border-patrol-cbp-trump-immigration-policy.)

By mid-June, an American pediatric ethics tragedy was in plain view, particularly in light of news that babies and toddlers are being interred in “tender age” facilities (See: https://apnews.com/dc0c9a5134d14862ba7c7ad9a811160e.) Seasoned reporters, in fact, became “unglued” with moral distress when they read the Associated Press report on-air.

To any pediatric healthcare provider, the pediatric healthcare issues are well-known. In the field of pediatric endocrinology, the effects of stress hormones on children are well known and documented. (See, for example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3574783/  or http://stke.sciencemag.org/content/5/248/mr1.full.) When children suffer emotional trauma, there are irreparable physiological changes and changes to the brain.

The American Association of Pediatrics published the following statement: https://www.aap.org/en-us/about-the-aap/aap-press-room/Pages/StatementOpposingSeparationofChildrenandParents.aspx

The American Psychological Association published this statement: http://www.apa.org/news/press/releases/2018/05/separating-immigrant-families.aspx

The American Psychiatric Association published this statement, along with several other mental health organizations: https://www.psychiatry.org/newsroom/news-releases/apa-statement-opposing-separation-of-children-from-parents-at-the-border

The Bioethics community published this statement: http://www.bioethics.net/2018/06/child-abuse-as-immigration-policy-has-america-lost-its-moral-compass/

The current Attorney General of the United States has defended the policy as being sanctioned by the “bible”. (See: https://www.washingtonpost.com/politics/sessions-cites-bible-to-defend-separating-immigrant-families/2018/06/14/7b20b9fa-7014-11e8-b4d8-eaf78d4c544c_story.html?utm_term=.4ea07ec68e7f.) The White House architect of the child separation policy, boasts that it is a “deterrent” for immigration and proof that the Trump Administration is strong on border security. (See: https://www.bostonglobe.com/opinion/editorials/2018/06/19/stephen-miller-architect-family-separation-border-must/q7u4GAtQUdbrs1DSMgx0MI/story.html.)

Due to mounting public pressure, an Executive Order to halt separation of families was signed by President Trump, but there is no plan to reunite the children already separated from their families, and confusion over how track them (See: https://www.nytimes.com/aponline/2018/06/22/us/ap-us-immigration-separating-families.html.)

It is difficult to assess the long-term consequences of what can only be called a pediatric ethics catastrophe created by the U.S. government.


Transgender Medicine

Transgender and Military Ethics

March 31, 2018 • By

Another ban was issued this month surrounding transgender individuals serving in the military, based on a February report signed by James Mattis. (See: https://news.usni.org/2018/03/23/pentagon-report-recommendations-transgender-troops-serving-military.)

Those diagnosed with gender dysphoria will apparently be subject to the ban. (See: https://www.military.com/daily-news/2018/03/23/new-trump-transgender-military-policy-bars-those-gender-dysphoria.html.) The ban will apply to “persons with a history or diagnosis of gender dysphoria — including individuals who the policies state may require substantial medical treatment, including medications and surgery — are disqualified from military service except under limited circumstances.”

The Pentagon is making the argument that traditional criteria for mental health and stability should apply here. This raises the clinical ethics question as to whether “gender dysphoria” be treated as a mental health issue or an endocrine issue? According to the American Psychiatric Association, gender dysphoria is what distinguishes whether distress is associated with questions about one’s gender identity. (See: https://www.psychiatry.org/patients-families/gender-dysphoria/what-is-gender-dysphoria.)

According to the White House “The experts’ study [in the February report] sets forth a policy to enhance our military’s readiness, lethality, and effectiveness…[and] concluded that the accession or retention of individuals with a history or diagnosis of gender dysphoria — those who may require substantial medical treatment, including through medical drugs or surgery — presents considerable risk to military effectiveness and lethality.”

Ultimately, the U.S. military is closing its doors to transgender individuals. Eventually, it will probably need to be addressed by the courts, with endocrinologists needing to serve as the experts.



Crisis of Conscience

January 31, 2018 • By

This month, the Trump Administration introduced a mechanism through HHS for healthcare providers to object to performing procedures they find morally distressing or objectionable based on their religion, or as reported:  to “ease the way for doctors, nurses or other medical professionals to opt out of providing services that violate their moral or religious beliefs” (See: https://www.washingtonpost.com/news/to-your-health/wp/2018/01/18/new-hhs-civil-rights-division-charged-with-protecting-health-workers-with-moral-objections/?utm_term=.81912e085354).

HHS will soon create the Conscience and Religious Freedom Division — an entire division devoted to conscientious objection.  The vast majority of bioethicists find this announcement to be cause for concern because it introduces further barriers to healthcare for many groups already disenfranchised or vulnerable, including women needing reproductive healthcare or transgender patients.  But it also violates what bioethicists see as clear duties of care inherent in the medical profession (See: https://www.reuters.com/article/us-usa-healthcare-religion/u-s-government-to-shield-health-workers-under-religious-freedom-idUSKBN1F7262).

I have mixed feelings about this new division, which may become a cautionary tale for the Trump Administration. Moral diversity and “moral objection” swings many directions, and by creating an official conscientious objection division, the Trump Administration must now allow for a wide range of moral protections for practitioners.  In some ways, this could provide unanticipated protections for the very groups the Administration seeks to inconvenience.

First, most hospitals already have these institutional policies in place. As a clinical ethicist, I invoke these policies frequently to protect and preserve the moral integrity of healthcare providers involved in care plans they find objectionable. I have rarely invoked these policies, however, for objections on religious grounds. I have mostly used them to relieve moral distress over medically inappropriate care plans in which limits to autonomy have not been properly asserted or championed by the institution, such as in situations where surrogates are demanding treatments that make no medical sense, and practitioners feel they are crossing ethical lines to appease surrogates. I have also invoked these policies to excuse practitioners from being forced to care for patients who have personally threatened them or their families, which sometimes includes situations where patients or surrogates are making personally racist statements, or when hateful misogynists make statements against their female doctors. In the Trump Era, healthcare providers newly exposed to racist comments are immigrants with accents from all parts of the world – many of whom are permanent residents or U.S. citizens.

In many of these cases, conscientious objection has worked well; in most institutional policies, there is a  mechanism for transfer of care or referral, and in extreme situations, transfer care to the Chief Medical Officer. Thanks to the Trump Administration, practitioners who experience racist patients, can now use the HHS’ new division to “object to care” on moral grounds. White supremacist patients, or patients who are anti-immigration, may be in for a shock when their practitioners “object” to caring for them because the patients’ personal views violate their moral integrity. Alternatively, practitioners who don’t believe women are equal based on their religion, for example, may decide that they don’t want to work with female colleagues in a secular environment and invoke “conscientious objection” to having to converse with another female colleague. The Trump Administration may become mired in all kinds of sticky cases arising from conscientious objection that has nothing to do with reproductive care. Could LGBT practitioners “object” to being forced to caring for patients who don’t support LGBT rights? Or, in a politically divisive country, perhaps Democrats can now morally object to caring for Republican patients, or vice versa. What might count as a legitimate claim of moral objection? Good luck with that.

A  2012 law review piece by Paul-Emile suggests that we should make every effort legally and ethically to  accommodate any patient’s request to see a different practitioner — even if the grounds are racist (See: https://www.uclalawreview.org/patients’-racial-preferences-and-the-medical-culture-of-accommodation/) as neither the practitioner nor patient is served when there is a breakdown in patient-practitioner trust.

Transfer of care or referral is an important caveat in any ethical conscientious objection policy, and the HHS’ new division will be no exception. In cases where the objector refuses to transfer care because of claims of “moral complicity”, this is where such policies become unworkable. I’ll be looking carefully for that “parachute clause” in the division’s language.

So, in response to the new HHS entity: conscientious objection swings both ways. Most of the care providers will object to care plans that probably have nothing to do with reproductive care. This new, controversial division may lead to a tsunami of moral assertions that block access to care for its most enthusiastic supporters because they may not realize that some of their own moral assertions may not be shared by the practitioners they will confront in the real world.


Reproductive Endocrinology

2017: Year of Women’s Reproductive Rage

December 30, 2017 • By

If you’re an endocrinologist with patients in their reproductive years, then here is a prescription for mandatory viewing: Hulu’s The Handmaid’s Tale, which is to reproductive justice what the 1997 film, Gattaca was to genetic sequencing. Part cautionary tale, and part “we’re practically there.” And soon, “Um…that actually happened last week.”

The premise of the series is that in the wake of decades of unregulated environmental toxins, most American women are now sterile; a small minority are able to conceive. Meanwhile, the political structure of the U.S. deteriorates into an authoritarian state ruled by Christian fundamentalists who assign roles to the females in the population: some are the “wives” of the ruling class in traditional marriages where women are subservient to males; some are forced “domestics” (the cooks and housekeepers); some are forced into reproductive service as “handmaids” to the infertile couples. Handmaids must submit to unconsensual intercourse with the male heads of households to which they’re assigned, with the goal of serving as surrogate birth mothers for the infertile ruling class. What about the lesbians? They are “gender traitors” who have forced clitoridectomies. (For more analysis of the series, see: https://www.newyorker.com/magazine/2017/05/22/a-cunning-adaptation-of-the-handmaids-tale).

Based on the 1985 novel by Margaret Atwood, The Handmaid’s Tale asks a central question in the Trump era: Do women have autonomy or not? And, by extension, do women’s voices mean anything?

In 1985, Atwood was initially writing the novel in the context of the Reagan era, and the “moral majority” which was a movement that inspired her fictional and futuristic version of the United States in which the Constitution is dissolved by a far right, Christian militia, renaming the U.S. “Gilead”. Here is a 1981 New Yorker piece on the burgeoning “moral majority” entitled “A Disciplined Charging Army”: https://www.newyorker.com/magazine/1981/05/18/a-disciplined-charging-army

The 1980s “moral majority” was a feminist backlash movement that wanted to stop women’s social and reproductive progress, which it saw as a threat to the traditional family. But The Handmaid’s Tale was also written during the burgeoning era of artificial reproductive technologies (ART), such as IVF and surrogate motherhood. The “moral majority” eventually became the base of the Republican Party, which now operates all three branches of government. In 2017, to satisfy its base, we watched the Republican Party disband its Constitutional duties of oversight to cede control to the Executive Branch. We watched, too, as our democratic norms once “guaranteed” under the U.S. Constitution eroded. Now, we are living in a time in which the U.S. Congress is actively enabling an authoritarian, illiberal President of questionable decision-making capacity. Ultimately, the Trump era is one where anti-feminist, anti-civil rights, anti-science, and anti-evidence-based policies are fast becoming normalized. Legislators who are proponents of the Trump agenda pride themselves on restricting women’s reproductive rights and the civil rights of the LBGT community; the President is actively trying to ban transgender persons from military service (See: http://endocrineethicsblog.org/the-presidents-gender-bender/)

Of course, erosion of women’s reproductive rights did not happen overnight; state legislatures have been in Republican control for several years due to low voter turnouts in local and mid-term elections during the Obama era. A myriad of abortion restrictions and TRAP laws were introduced between 2011-2016 (See: http://endocrineethicsblog.org/2016/06/), but over 400 more abortion restrictions were introduced in 2017, with some states requiring completely unethical statements be made to the patients seeking the procedures, including (in Utah) a requirement that doctors attempt to medically rescue aborted fetuses when they are removed from the womb. (See: http://www.motherjones.com/politics/2017/04/guttmacher-report-abortion-restrictions-proactive-legislation-first-quarter-2017/#). In April, President Trump signed a new law to withhold public funds used for family planning (see: https://www.npr.org/sections/thetwo-way/2017/04/13/523795052/trump-signs-law-giving-states-option-to-deny-funding-for-planned-parenthood)

Earlier this month we learned that the Trump Administration has now banned the CDC and the Department of Health and Human Services from using certain words, such as “evidence-based”, “fetus” and “transgender”. (See: https://www.washingtonpost.com/national/health-science/cdc-gets-list-of-forbidden-words-fetus-transgender-diversity/2017/12/15/f503837a-e1cf-11e7-89e8-edec16379010_story.html?utm_term=.d1971c7307a8).

Ultimately, despite so many political distractions, 2017 was a very productive year for the erosion of women’s reproductive and civil rights.

On January 21, 2017, the year began with the Women’s Marches across the U.S., and in many other countries the day after the 45th President of the United States was elected despite his statements on video that he could “grab women by their pussies” whenever he wanted. The iconic symbol of the Women’s Marches became the pink “pussy hat”. But as the year progressed, policies targeting women have been a key part of the Trump agenda. Here is a summary of legislation on the menu in the first 100 days: https://www.americanprogress.org/issues/women/reports/2017/04/25/430969/100-days-100-ways-trump-administration-harming-women-families/).

Additionally, there were multiple attempts to repeal the Affordable Care Act and remove basic access to women’s health. (See: http://endocrineethicsblog.org/kill-bill-volume-1/)

But the most significant achievement in eroding women’s rights was the appointment of Neil Gorsuch to the “stolen” Supreme Court Seat. Gorsuch, a conservative judge, remains a threat to Roe v. Wade. The Trump Administration has also been very busy installing conservative judges on the federal courts (https://www.nytimes.com/2017/11/11/us/politics/trump-judiciary-appeals-courts-conservatives.html), who will surely help to rule in favor of laws that erode women’s reproductive rights and justice in the future. For now, the federal courts have held that women still have reproductive rights. But that could change quickly, particularly with the current Attorney General at the helm, who would feel right at home in “Gilead”. Alas, even if Trump gets impeached, the current Vice President is a character right out of “Gilead”, too. Under a potential Pence Administration, a Gileadian future is even more possible. We have already seen some foreboding signs this year. Undocumented pregnant women have been held against their will by the Justice Department, and prevented from accessing constitutionally protected abortions. In one case, even when the ACLU attorneys ultimately won the case for an undocumented teen to get an abortion, the Justice Department started suing the ACLU’s attorneys. See: https://www.washingtonpost.com/politics/courts_law/undocumented-immigrant-teen-has-abortion-ending-weeks-long-court-battle/2017/10/25/9805249a-b90b-11e7-9e58-e6288544af98_story.html?utm_term=.6930202c44b6



As for Atwood’s dystopian premise of environmental toxins interfering with fertility, that story has been ongoing since the discovery of endocrine disruptors (see: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3845732/) in the wake of weak regulations on organochlorines. Although the Obama Administration began to implement stricter regulations on environmental threats, in 2017 the EPA was effectively dismantled, and its scientists silenced, by the new anti-EPA director, Scott Pruitt. (See: https://www.pbs.org/wgbh/frontline/film/war-on-the-epa/). Between the destruction of the EPA, and the President’s exit from the Paris Climate Accord, it’s “deregulation gone wild” as polluters are granted the freedom to let loose. There is no telling how environmental deregulation will affect reproductive health; children’s health, and public health in general.

We are closer to The Handmaid’s Tale than you think, but there are signs that women are beginning to use their rage to prevent a future that is so tangible, we can taste it. The #MeToo Movement, which erupted in the Fall, closed the year, as women started to call out by name their sexual predators, sexual harassers and uninvited gropers, putting an end to several prominent males’ careers. It remains to be seen if there will be a male backlash. But we need to remember that right now, women’s civil and reproductive rights hang by a thread.

Atwood stated that The Handmaid’s Tale was an “antiprediction” because “if this future can be described in detail, maybe it won’t happen.” Indeed 2017 paved the way for women’s reproductive rage to translate into real legislative power. In Virginia, women were responsible for nearly flipping the state legislature by running for local office and voting out white males. In Alabama, African American women, in particular, were responsible for staving off a white male predator who meets the legal definition of a pedophile, and even stated he was pro-slavery.

The Handmaid’s Tale is too close for comfort; but 2018 may become the year women literally run for their lives (and reclaim their reproductive autonomy). One thing is certain: women will no longer accept “Lock Her Up” when they ask for power.