Mark W. Leach

‘Fetal Flaw’: the new eugenics rising

Mark W. Leach
By Mark Leach
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August 22, 2012 (thePublicDiscourse.com) - This year has seen a rash of medical studies reporting on developments in cell-free fetal DNA (cffDNA) prenatal testing. Not too long ago, one commentator cautioned that as prenatal genetic testing becomes more pervasive, our society risks developing a “eugenics common sense.” The reporting on the new cffDNA testing suggests that some have already developed this sensibility.

In October 2011, Sequenom, a publicly traded company, introduced its version of cffDNA prenatal testing. As the name suggests, floating in each expectant mother’s blood stream are bits of DNA from the child she is carrying. The new testing procedure tests this fetal DNA and can detect with the greatest reported sensitivity whether the fetus has Down syndrome. Because of false positives, cffDNA testing remains a screening-type test, providing a reassessment of the likelihood that the child has Down syndrome; it is not a diagnostic test, yet.

Sequenom’s competitors Verinata and Ariosa entered the market this year with their versions of cffDNA testing. Like Sequenom, they heralded their testing with medical journal articles and press releases. Reporting on these new tests has employed language with a notable eugenics lexicon.

In his recent column for Slate—headlined “Fetal Flaw”—Will Saletan praised the advances in prenatal testing for informing mothers if they are pregnant with a “defective fetus.” Saletan used the new tests as a wedge in abortion politics. Citing various polls, he argued that it will be difficult for pro-lifers to persuade a majority to be opposed to this new testing, even though Saletan rightly expects that the numbers of abortions will increase. Because it would be difficult to enforce any prohibition against aborting for specific reasons—such as the recent attempt by the House of Representatives to make sex-selective abortion illegal—Saletan almost gloats that the new tests will allow for even more eugenic abortions, i.e., abortions due to the fetus’s genetic make-up.

A month before Saletan’s article, Newsweek reported on the “epidemic of special needs kids.” As the charged word “epidemic” suggested, the article discussed the growing burden of caring for more children with autism and Down syndrome because of the costs of medical care. Almost lamentably, the article notes that these burdens have been somewhat compounded because, due to societal advances in medical care and inclusion in mainstream society, individuals with intellectual and developmental disabilities are now enjoying longer—and therefore costlier—lives.

Burden. Defective. Epidemic. These were terms commonly used in the eugenics era at the turn of the last century to justify compulsory sterilizations and involuntary euthanasia. But raise concerns at the turn of this century over prenatal genetic testing, and, as Mr. Saletan shows, the critics will be dismissed for simply being Luddites, against the advances of technology in the information age. What Mr. Saletan and other proponents of prenatal genetic testing ignore is that while technology may be value-neutral, how it is administered is not.

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The administration of prenatal genetic testing does not happen in a hermetically sealed vacuum. Counseling about prenatal testing is not cut off from the biases and prejudices of society. Rather, it is promoted and administered by an academic, scientific, and professional elite where such bias and prejudice are concentrated.

The medical profession is still largely trained to view humans in a bio-medical perspective: what’s wrong with the patient? And that wrongness is defined by what the professional performing the diagnosis views as normal or desirable. Therefore, it should not be surprising that a profession that exalts those with the highest academic performance would view those with more apparent cognitive challenges as having something wrong with them—as being “defective.”

Studies have found that medical professionals admit that they are poorly trained in both prenatal testing and the conditions currently tested for, the main one being Down syndrome. Moreover, the medical school deans in charge of training them admit that their future medical professionals are not competent to treat individuals with intellectual disabilities. Is it any wonder, given this training, or lack thereof, and the culture in which they strive to succeed, that medical professionals overwhelmingly admit that they would abort following a prenatal diagnosis for Down syndrome? Simultaneously, medical professionals have a financial incentive for their patients to accept testing, which provides more revenue for their practice.

It is into these hands that Saletan, and the rest of society, is entrusting the ethical administration of prenatal testing, justified as empowering a woman’s right to choose. This systemic bent toward providing prenatal testing despite the ethical concerns associated with it was demonstrated the week after Saletan’s article was published.

The International Society for Prenatal Diagnosis (ISPD) held its conference where the same testing Saletan writes about is all the rage. Speakers used terminology similar to Saletan’s with a similar perspective: who could be against testing that can identify what they consider a genetic “disease”?

In the very first session of the conference, Dr. Yuval Yaron, Director of the Prenatal Diagnosis Unit at Tel Aviv Sourasky Medical Center, argued that testing for Fragile X syndrome should be universally offered, even though he admitted it failed to meet one element of his cited criteria for such a recommendation. According to Yaron, and the World Health Organization, for a test to be acceptable as a screening test, it must be accurate, cost-effective, and identify conditions for which there is a treatment. Currently there is no treatment for prenatally genetically diagnosed conditions such as Down and Fragile X syndromes. Yaron even admitted this. But, echoing the arguments of last century’s proponents of eugenics, Yaron argued that the test should nevertheless be offered to every woman, because an economic analysis could demonstrate that the costs of women accepting the testing could be offset by the amount of public health-care money saved if those women aborted their “defective” fetuses with Fragile X.

Days after the ISPD conference, the TODAY Show on NBC featured a union of the medical profession and the media on developing a eugenics common sense.

Currently, cffDNA testing can only detect a few genetic conditions. Other researchers, however, have reported identifying 3,500 genetic conditions based solely on a sample of the mother’s blood and the father’s saliva. The TODAY Show carried a segment with their senior medical editor Dr. Nancy Snyderman commenting on these research results. The host asked, “Do you think it raises ethical issues? I mean at what point, if you have information that your child is going to have a genetic problem, and then you’re posed with the question of whether to go forward with the pregnancy?” Snyderman answered, “Well, I’m pro-science, so I believe that this is a great way to prevent diseases.”

In the wake of such statements, New York Times columnist Ross Douthat wondered whether our society was on the verge of another era of eugenics. But Douthat states that governmental eugenic policies are “all but unimaginable in today’s political climate.” Put aside that the Obama administration has mandated no-cost prenatal genetic testing as a means of “preventive” medicine. The more fundamental question is: why is the existence of a governmental policy the critical element for raising moral concerns about the eugenic implications of prenatal genetic testing? Is the lesson of the previous eugenics atrocities that viewing others as burdensome defectives ripe for elimination is wrong only when a governmental policy says so? Or, is not the lesson that it is wrong to view another human life as defective, as a burden, regardless of whether there is a governmental policy or not?

But that is the other distinction. As the argument goes: The impact of prenatal testing for Down syndrome is not morally problematic not only because abortion is not governmentally mandated following a prenatal diagnosis, but testing deals with fetuses, not ex utero human beings. Because there is no consensus on the moral status of the fetus, then it is incorrect to talk of eugenics when it comes to aborting a fetus with a genetic condition.

What else, though, do the commentators and medical elite mean when they refer to defective fetuses? Of course, they mean the child that will be born if the pregnancy is allowed to continue. That child, who to them poses a burden or has a disease, is to be prevented through abortion. But defective is in the eye of the beholder.

Again, this, too, is the lesson from last century’s eugenics. While it began with individuals termed “feeble-minded,” it also included those with physical disabilities, homosexuals, and, ultimately, Jews. The progress in civilized society that followed the Holocaust was due in part to the lesson being learned that once a group of people can be labeled as defective, then, so, too, can any other group, depending on who has the power to do the labeling. As a result, civilized nations became more inclusive of all individuals, regardless of race, disability, ethnicity, or sexual orientation.

Unfortunately, it seems we have an ingrained bent toward finding a reason to discriminate against others. As a result, continual education is required to tame that bent and provide for a civilized society. The recent comments on the advances in prenatal genetic testing demonstrate the continued need for these educational efforts. Earlier this summer, Massachusetts joined states such as Missouri and Virginia in requiring that accurate, up-to-date information be provided to expectant mothers receiving a prenatal diagnosis of Down syndrome and other diagnosable conditions. If there is a role for governmental policy concerning prenatal genetic testing, it is to require this balance in information. Otherwise, we will revert to developing a eugenics common sense and being doomed to repeat the atrocities of history.

Mark W. Leach is an attorney from Louisville, Kentucky, and a Master of Arts in Bioethics 2012 candidate. Mr. Leach gave a poster presentation on the ethical obligation for testing laboratories to provide educational materials with a Down syndrome diagnosis at the ISPD conference. This article reprinted with permission from ThePublicDiscourse.com.

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Newsbusters Staff

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Disney ABC embraces X-rated anti-Christian bigot Dan Savage in new prime time show

Newsbusters Staff
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March 30, 2015 (NewsBusters.org) -- Media Research Center (MRC) and Family Research Council (FRC) are launching a joint national campaign to educate the public about a Disney ABC sitcom pilot based on the life of bigoted activist Dan Savage. MRC and FRC contacted Ben Sherwood, president of Disney/ABC Television Group, more than two weeks ago urging him to put a stop to this atrocity but received no response. [Read the full letter]

A perusal of Dan Savage’s work reveals a career built on advocating violence — even murder — and spewing hatred against people of faith. Savage has spared no one with whom he disagrees from his vitriolic hate speech. Despite his extremism, vulgarity, and unabashed encouragement of dangerous sexual practices, Disney ABC is moving forward with this show, disgustingly titled “Family of the Year.”

Media Research Center President Brent Bozell reacts:

“Disney ABC’s decision to effectively advance Dan Savage’s calls for violence against conservatives and his extremist attacks against people of faith, particularly evangelicals and Catholics, is appalling and outrageous. If hate speech were a crime, this man would be charged with a felony. Disney ABC giving Dan Savage a platform for his anti-religious bigotry is mind-boggling and their silence is deafening.

“By creating a pilot based on the life of this hatemonger and bringing him on as a producer, Disney ABC is sending a signal that they endorse Dan Savage’s wish that a man be murdered. He has stated, ‘Carl Romanelli should be dragged behind a pickup truck until there’s nothing left but the rope.’ ABC knows this. We told them explicitly.

“If the production of ‘Family of the Year’ is allowed to continue, not just Christians but all people of goodwill can only surmise that the company Walt Disney created is endorsing violence.”

Family Research Council President Tony Perkins reacts:

“Does ABC really want to produce a pilot show based on a vile bully like Dan Savage?  Do Dan Savage’s over-the top-obscenity, intimidation of teenagers and even violent rhetoric reflect the values of Disney?  Partnering with Dan Savage and endorsing his x-rated message will be abandoning the wholesome values that have attracted millions of families to Walt Disney.”

Dan Savage has made numerous comments about conservatives, evangelicals, and Catholics that offend basic standards of decency. They include:

  • Proclaiming that he sometimes thinks about “f****ing the shit out of” Senator Rick Santorum

  • Calling for Christians at a high school conference to “ignore the bull**** in the Bible”

  • Saying that “the only thing that stands between my d*** and Brad Pitt’s mouth is a piece of paper” when expressing his feelings on Pope Benedict’s opposition to gay marriage

  • Promoting marital infidelity

  • Saying “Carl Romanelli should be dragged behind a pickup truck until there’s nothing left but the rope.”

  • Telling Bill Maher that he wished Republicans “were all f***ing dead”

  • Telling Dr. Ben Carson to “suck my d***. Name the time and place and I’ll bring my d*** and a camera crew and you can s*** me off and win the argument.”

Reprinted with permission from Newsbusters

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Jacqueline Harvey

Ending the end-of-life impasse: Texas is poised to ban doctor-imposed death by starvation

Jacqueline Harvey
By Jacqueline Harvey

AUSTIN, Texas, March 30, 2015 (TexasInsider.org)  After five consecutive sessions of bitter battles over end-of-life bills, the Texas Legislature is finally poised to pass the first reform to the Texas Advance Directives Act (TADA) in 12 years. An issue that created uncanny adversaries out of natural allies, and equally odd bedfellows, has finally found common ground in H.B. 3074 by State Rep. Drew Springer.  

H.B. 3074 simply prohibits doctor-imposed euthanasia by starvation and dehydration.

Since H.B. 3074 includes only those provisions and language that all major organizations are on record as having deemed acceptable in previous legislative sessions, there is finally hope of ending the end-of-life impasse in the Texas Capitol.

Many would be surprised to learn that Texas law allows physicians to forcibly remove a feeding tube against the will of the patient and their family. In fact, there is a greater legal penalty for failing to feed or water an animal than for a hospital to deny a human being food and water through a tube.

This is because there is no penalty whatsoever for a healthcare provider who wishes to deny artificially-administered nutrition and hydration (AANH). According to Texas Health and Safety Code, “every living dumb creature” is legally entitled access to suitable food and water.

Denying an animal food and water, like in this January case in San Antonio, is punishable by civil fines up to $10,000 and criminal penalties up to two years in jail per offense. Yet Texas law allows health care providers to forcibly deny food and water from human beings – what they would not be able to legally do to their housecat. And healthcare providers are immune from civil and criminal penalties for denial of food and water to human beings as long as they follow the current statutory process which is sorely lacking in safeguards.

Therefore, while it is surprising that Texas has the only state law that explicitly mentions food and water delivered artificially for the purpose of completely permitting its forced denial (the other six states mention AANH explicitly for the opposite purpose, to limit or prohibit its refusal), it is not at all surprising that the issue of protecting a patient’s right to food and water is perhaps the one point of consensus across all major stakeholders.

H.B. 3074 is the first TADA reform bill to include only this provision that is agreed upon across all major players in previous legislative sessions.

There are irreconcilable ideological differences between two major right-to-life organizations that should supposedly be like-minded: Texas Alliance for Life and Texas Right to Life. Each faction (along with their respective allies) have previously sponsored broad and ambitious bills to either preserve but reform the current law (Texas Alliance for Life’s position) or overturn it altogether as Texas Right to Life aims to do.

Prior to H.B. 3074, bills filed by major advocacy organizations have often included AANH, but also a host of other provisions that were so contentious and unacceptable to other organizations that each bill ultimately died, and this mutually-agreed-upon and vital reform always died along with it.

2011 & 2013 Legislative Sessions present prime example

This 2011 media report shows the clear consensus on need for legislation to simply address the need to protect patients’ rights to food and water:

“Hughes [bill sponsor for Texas Right to Life] has widespread support for one of his bill’s goals: making food and water a necessary part of treatment and not something that can be discontinued, unless providing it would harm the patient.”

Nonetheless, in 2013, both organizations and their allies filed complicated, contentious opposing bills, both of which would have protected a patient’s right to food and water but each bill also included provisions the rival group saw as contrary to their goals. Both bills were ultimately defeated and neither group was able to achieve protections for patients at risk of forced starvation and dehydration – a mutual goal that could have been met through a third, narrow bill like H.B. 3074.

H.B. 3074 finally focuses on what unites the organizations involved rather than what divides them, since these differences have resulted in a 12 year standoff with no progress whatsoever.

H.B. 3074 is progress that is pre-negotiated and pre-approved.

It is not a fertile springboard for negotiations on an area of mutual agreement. Rather it is the culmination of years of previous negotiations on bills that all came too late, either due to the complexnature of rival bills, the controversy involved, or even both.

On the contrary, H.B. 3074 is not just simply an area of agreement; moreover, it is has already been negotiated. It should not be stymied by disagreements on language, since Texas Alliance for Life and Texas Right to Life (along with their allies) were able to agree on language in 2007 with C.S.S.B. 439. C.S.S.B. 439 reads that, unlike the status quo that places no legal conditions on when food and water may be withdrawn, it would be permitted for those in a terminal condition if,

“reasonable medical evidence indicates the provision of artificial nutrition and hydration may hasten the patient’s death or seriously exacerbate other major medical problems and the risk of serious medical pain or discomfort that cannot be alleviated based on reasonable medical judgment outweighs the benefit of continued artificial nutrition and hydration.”

This language is strikingly similar to H.B. 3074 which states, “except that artificially administered nutrition and hydration must be provided unless, based on reasonable medical judgment, providingartificially administered nutrition and hydration would:

  1. Hasten the patient’s death;
  2. Seriously exacerbate other major medical problems not outweighed by the benefit of the provision of the treatment;
  3. Result in substantial irremediable physical pain, suffering, or discomfort not outweighed by the benefit of the provision of the treatment;
  4. Be medically ineffective; or
  5. Be contrary to the patient’s clearly stated desire not to receive artificially administered nutrition or hydration.”

With minimal exceptions (the explicit mention of the word terminal, the issue of medical effectiveness and the patient’s right to refuse), the language is virtually identical, and in 2007 Texas Right to Life affirmed this language as clarifying that “ANH can only be withdrawn if the risk of providing ANH is greater than the benefit of continuing it.”

Texas Right to Life would support the language in H.B. 3074 that already has Texas Alliance for Life’s endorsement. Any reconciliation on the minor differences in language would therefore be minimal and could be made by either side, but ultimately, both sides and their allies would gain a huge victory – the first victory in 12 years on this vital issue.

It seems that the Texas Advance Directive Act, even among its sympathizers, has something for everyone to oppose.

The passage of H.B. 3074 and the legal restoration of rights to feeding tubes for Texas patients will not begin to satisfy critics of the Texas Advance Directives Act who desire much greater changes to the law and will assuredly continue to pursue them. H.B. 3074 in no way marks the end for healthcare reform, but perhaps a shift from the belief that anything short of sweeping changes is an endorsement of the status quo.

Rather, we can look at H.B. 3074 as breaking a barrier and indicating larger changes are possible.

And if nothing else, by passing H.B. 3074 introduced by State Rep. Drew Springer, we afford human beings in Texas the same legal access to food and water that we give to our horses. What is cruel to do to an animal remains legal to do to humans in Texas if organizations continue to insist on the whole of their agenda rather than agreeing to smaller bills like H.B. 3074.

The question is, can twelve years of bad blood and bickering be set aside for even this most noble of causes?

Reprinted from TexasInsider.org with the author's permission. 

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