Inherent Problems with Commercial Surrogacy in India

The degree to which financial incentives can muddle ethical deliberation and practice is evident in the commercial surrogacy trade in Indian. For years, “rent-a-womb” services to foreigners has been “big business” indeed, generating nearly $1 billion annually.

Would-be Western parents, many from the U.K. and Scandinavia, argue that commercial surrogacy arrangements are a win-win situation for everyone. They get the baby they’ve longed for and the Indian women receive significant financial compensation. Surrogates typically are paid $6,000 or more to provide their womb. In a country in which average monthly earnings are $215, this is an extraordinary amount. The financial incentives for Westerners to do business in Indian fertility clinics should not be underestimated either. Costs for a surrogate birth in India total $15,000-$20,000, approximately one-tenth the price that would be incurred in a California clinic. What’s not to like about people desperately desiring a baby receiving one at a bargain rate, while desperately poor Indian women receive several years’ worth of income for nine-months work?

There’s plenty not to like about these arrangements. One of the greatest concerns is the exploitation of the poor who comprise the vast majority of surrogates. Free and informed consent by Indian surrogates may not be as free as it appears. In her recently completed Ph.D. dissertation on commercial surrogacy in India, Kristin Engh Førde argues that financial desperation has the potential to override genuine personal autonomy: “They are forced to make money for their family and their chances for succeeding are extremely low…Some have a major debt to pay, such as a hospital bill…Many feel that surrogacy is a chance they have to take. And it’s important for them to distance themselves from the choice. It was not something they wanted; it was something they had to do.”

Julie Bindel contends that commercial surrogacy represents an exploitation of women generally, not simply of poor women specifically: “As a feminist campaigner against sexual abuse of women, and in particular the sex trade, I feel sick at the idea of wombs for rent. Sitting in the clinic, seeing smartly dressed women come in to access fertility services, all I could think about was how desperate a woman must be to carry a child for money. I know from other campaigners against womb trafficking that many surrogates are coerced by abusive husbands and pimps. Watching the smiling receptionist fill out forms on behalf of prospective commissioning parents, I could only wonder at the misery and pain experienced by the women who will end up being viewed as nothing but a vessel.”

Fortunately, the Indian government has taken notice of the actual and potential abuses inherent in commercial surrogacy. After all, what country wants to be known as the bargain-basement destination for the exploitation of women and the poor? As of October, 2016, foreigners are prohibited from “renting” Indian wombs, though it is doubtful this official action will shut down the trade completely and permanently. Big money talks, whether the market is officially opened or closed.

On a personal note, I am distressed by the effects of commercial surrogacy in India. Having travelled to India often over the years, I’ve come to love the country and its warm, friendly, and hospitable people. It is evident to this visitor that Indians highly value parenthood and family. I can hardly imagine a practice that has greater potential to destroy the wonderful family dynamics I’ve observed in my travels than commercial surrogacy marketed to rich Westerners. I applaud the India government for taking the first difficult step, at significant economic loss to the country’s economy. In the case of commercial surrogacy, market forces cannot help but impinge virtuous ethical decision-making.

All We Need is (Unconditional) Love

On March 24, 2017, Joe Gibes posted an entry on this blog, entitled “A ‘disabled’ person speaks out against a particular form of discrimination.”[1] That post featured links to several stories about Kathleen Humberstone, a young woman with Down Syndrome who spoke at a recent UN event commemorating World Down Syndrome Day, which was observed on March 21.

After reading through Joe’s post and the stories to which his post links, I’d like to add the following two very basic observations (which I will only state here – further elaboration shall have to await another time):

  • OBSERVATION #1: Thankfulness and disability are entirely compatible – indeed, one can be genuinely thankful for one’s disability. “Thank you Down’s syndrome!” Kathleen says enthusiastically, in her prepared remarks for the UN event.[2] It’s hard to imagine she doesn’t mean this sincerely.
  • OBSERVATION #2: As Hans S. Reinders has said repeatedly,[3] often the thing that people with profound intellectual disabilities need most is simply to be chosen as friends. This point is easily generalizable to persons with any kind of disability—very often, what we “need” most is simply friendship, not “healing” or “relief” or “freedom” from the (supposed) “burden” of disability itself.

With continued developments in prenatal genetic testing techniques, including the relatively recent advent of non-invasive prenatal testing (NIPT), it has become even easier to detect, at earlier and earlier points in pregnancy, the presence of disabilities such as Down syndrome. And this, of course, opens the door to so-called “selective termination” of unborn children who test “positive” for such conditions.

For Denise Humberstone, Kathleen’s mom, this makes no sense whatsoever. Why shouldn’t we accept all persons, Denise wonders, including those with Down syndrome and other disabling conditions, with the same kind of unconditional love that we would offer to any other, nondisabled person?

“Whatever happened to unconditional love?” she asks. “When did society decide we should want and love a child only if it is as perfect as medical research allows?”

In a Facebook post[4] written just prior to Kathleen’s speech at the UN event, Denise addresses the “unrealistic demands for perfection” that appear to drive so many of these decisions to abort unborn children diagnosed with Down syndrome and other disabilities:

I’m also wondering if in parallel to scientific research, these unrealistic demands for perfection stem from the fact that we are also now living in a world where we can not only get anything we want off the internet but that item always comes with a return form should it not be up to your expectations. Not perfect? Bam! Return it, free-post, no questions asked, item will be replaced in no time….

What are we teaching our children? People are worthy of life and love only if they are perfect? We can’t cope with children unless they’re perfect? Your marriage/partnership won’t last unless your children are perfect? Siblings will be ok as long as they are all perfect? I can assure you that my friends are not happier because they don’t have a child with special needs…. There is always something to be unhappy about, it’s human nature.

So why can’t we just go back to the basics and try and love unconditionally? Why can’t we just deal with the hand we’ve been dealt… and rise up to the challenges that life throws at us?

Around the same time as Joe posted his blog entry about Kathleen Humberstone, quadriplegic and disability advocate Joni Eareckson Tada posted a blog entry[5] about World Down Syndrome Day. Here’s what she wrote:

I love smiling children… the image imparts such hope and joy, reminding us we are all made in the image of God. I especially delight in the smile of a child with Down syndrome. Anyone who has rubbed shoulders with someone who has Down syndrome will rave about the love, openness, and zest for life they bring to every family. Their laughter and joy is infectious. Today, as we celebrate World Down Syndrome Day, I’m reminded of a touching video I saw two years ago – titled “Dear Future Mom,” it shows children and teens with Down syndrome. Each has something brief and sweet to say about their disability. Then, they look into the camera and address the worries of any pregnant woman who is fearful about carrying a child with Down syndrome.

This video blessed me so much, I just had to share it with you. Perhaps you know of an expectant mother who has learned her baby has a genetic disorder. Please share this with her – the smiles on the faces of these young people will ease fears and give hope, helping her welcome her precious baby into the world.[6]

In the end, Kathleen Humberstone and the children and teens featured in “Dear Future Mom” remind us of what we all need the most: unconditional love.

 

[1] See http://blogs.tiu.edu/bioethics/2017/03/24/a-disabled-person-speaks-out-against-a-particular-form-of-discrimination/.

[2] http://www.bbc.co.uk/newsbeat/article/39339338/downs-syndrome-teenager-addresses-the-un-in-geneva

[3] See, for example, his Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics (Grand Rapids, MI: Eerdmans, 2008).

[4] https://www.facebook.com/denise.humberstone/posts/10155948159319126?comment_id=10155950465429126&reply_comment_id=10155950568324126&notif_t=feed_comment_reply&notif_id=1488705525554890

[5] http://www.joniandfriends.org/blog/world-down-syndrome-day-2017/

[6] “Dear Future Mom” can be viewed here: https://youtu.be/Ju-q4OnBtNU.

Surrogacy in the Market of Desire

The State of Florida has spilled no small quantity of ink outlining the legal confines of gestational surrogacy (see particularly sections 742.13-742.17, here).  Legally permitted gestational surrogacy in Florida does not include “bringing in and harboring aliens, sex trafficking of children, forced labor and furthering slave traffic,” however; these charges were leveled against Esthela Clark in 2015. Clark had held a Mexican woman in her one-bedroom apartment, repeatedly inseminating her with semen from Clark’s boyfriend. When the woman failed to become pregnant, she was forced to have sex with two strangers, and placed on a diet restricted to beans.  On 29 March 2017, the 47-year-old Clark from Jacksonville, FL, pled guilty to one count of forced labor. The woman had been forced to clean Clark’s apartment. (See story here.)  What happened to the issues surrounding the smuggling of the woman across the border in order to be a surrogate for Clark and her boyfriend?

On the other side of the globe, India is arguably the world’s leading provider of surrogate mothers, with the industry estimated several years ago as “likely worth $500 million to $2.3 billion.”  India legalized surrogacy in 2002, and is now considering reining in its surrogacy situation:

     The Surrogacy (Regulation) Bill, 2016

 

  • The Surrogacy (Regulation) Bill, 2016 was introduced by Minister of Health and Family Welfare, Mr. J. P. Nadda in Lok Sabha on November 21, 2016.  The Bill defines surrogacy as a practice where a woman gives birth to a child for an intending couple and agrees to hand over the child after the birth to the intending couple.
  • Regulation of surrogacy:  The Bill prohibits commercial surrogacy, but allows altruistic surrogacy.  Altruistic surrogacy involves no monetary compensation to the surrogate mother other than the medical expenses and insurance coverage during the pregnancy.  Commercial surrogacy includes surrogacy or its related procedures undertaken for a monetary benefit or reward (in cash or kind) exceeding the basic medical expenses and insurance coverage.
  • Purposes for which surrogacy is permitted:  Surrogacy is permitted when it is, (i) for intending couples who suffer from proven infertility; and (ii) altruistic; and (iii) not for commercial purposes; and (iv) not for producing children for sale, prostitution or other forms of exploitation.

In their 2012 Journal of Medical Ethics article, Deonandan, Green and van Beinum formulate eight “Ethical concerns for maternal surrogacy and reproductive tourism

Robustness of informed consent

Custody rights

Quality of surrogate care

Limits of surrogate care

Remuneration

Multiple embryo transfers and abortion

Medical advocacy

Exploitation of the poor

Of the eight ethical concerns Deonandan et al found in the Indian experience of surrogacy, at least five of them were present in the Florida case described above –and that would-be surrogate was not even pregnant! It seems that India is not the only entity that should reconsider commercial surrogacy.

 

— D. Joy Riley, M.D., M.A., is executive director of The Tennessee Center for Bioethics & Culture.

The Gift of Finitude

I’ve been thinking a lot lately about finitude. About limits. Incompleteness. Even failure.

Like the friend of a friend who is dying and has just been admitted to hospice, whose young teenaged daughter is facing the prospect of a life without her mother.

Like the colleague who is grieving the loss of both a spouse and a parent within a month of each other.

Like my power wheelchair that keeps breaking down, making everyday activities significantly more challenging.

Like the never-ending “to-do” list that seems to be anything but finite, and never quite seems to get any shorter.

Life is, in a word, full of limits. Boundaries. Unavoidable stopping points.

Or is it?

What if we could transcend our limits, as recent developments in genetic and related technologies (e.g., CRISPR) seem to promise? What if, through genetic manipulations of various sorts, we could significantly reduce our limitations—eliminate specific diseases and disabling conditions, improve cognitive function, “select” for desired physical traits, and so on?

If we could do these things, should we do them?

Of course, as anyone who has followed the field of bioethics for even a short period of time knows, these questions are neither new nor hypothetical. In many ways, the “future” is already here: we “enhance” ourselves, “transcend” limits and boundaries, and otherwise seek to “overcome” finitude in a myriad number of ways, on a daily basis. And much of this is salutary.

Still, it’s always worth pausing to consider: supposing finitude could be eliminated entirely from our lives (which seems extraordinarily doubtful), is it the sort of thing we ought to try to eliminate? Put differently: is there anything good about finitude, such that we ought to embrace it (even if in a qualified way)?

Gilbert Meilaender, a bioethicist and Distinguished Fellow of The Center for Bioethics and Human Dignity, suggests that there is something good about finitude. In a reflection on the “created duality” of our human nature—we are simultaneously both “free” and “finite”—Meilaender observes that this “two-sidedness” to our nature both opens up possibilities and imposes certain limits upon us. We are, he observes,

created from dust of the ground—finite beings who are limited by biological necessities and historical location. We are also free spirits, moved by the life-giving Spirit of God, created ultimately for communion with God—and therefore soaring beyond any limited understanding of our person in terms of presently “given” conditions of life…. Made for communion with God, we transcend nature and history—not in order that we may become self-creators, but in order that, acknowledging our Creator, we may recognize the true limit to human freedom. Understanding our nature in this way, we learn something about how we should evaluate medical “progress.” It cannot be acceptable simply to oppose the forward thrust of scientific medicine. That zealous desire to know, to probe the secrets of nature, to combat disease—all that is an expression of our created freedom from the limits of the “given,” the freedom by which we step forth as God’s representatives in the world. But a moral vision shaped by this Christian understanding of the person will also be prepared to say no to some exercises of human freedom. The never-ending project of human self-creation runs up against the limit that is God. It will always be hard to state in advance the precise boundaries that ought to limit our freedom, but we must be prepared to look for them.[1]

I am inclined to agree with Meilaender. Moreover, as I have shared in an autobiographical essay published recently,[2] my own experiences as a person with a physical disability have taught me valuable life lessons that, arguably, might not have been learned otherwise—lessons such as the value of patience and endurance, accepting my limits (an ongoing struggle, I must admit!), and even the importance of having a sense of humor at the (sometimes ridiculous) circumstances in which one finds oneself. Our limits shape our character, our career, and our life choices as much as do our “freedoms”—often in surprising and unexpected ways, and frequently for the better.

None of these reflections, of course, even begin to scratch the surface of the “what?”, “where?”, “when?”, “how?”, or “why?” questions related to the ethical permissibility (or lack thereof) of pursuing various genetic, reproductive, or other technologies. Nor do they, by themselves, tell us whether (and when) we ought or ought not to avail ourselves of abortion, physician-assisted suicide, euthanasia and the like.

They do, however, remind us of one very simple, yet all-too-often overlooked fact: finitude is, in many ways, a gift. Let us not neglect it.

 

[1] Gilbert Meilander, Bioethics: A Primer for Christians, 3rd ed. (Grand Rapids, MI: Eerdmans, 2013), 3-5.

[2] See “Why am I Disabled? Reflections on Life’s Questions and God’s Answers,” in the Beyond Suffering Bible (Tyndale, 2016), available at beyondsufferingbible.com and http://www.joniandfriends.org/bible/.

Testing, testing: Prenatal genetic screening

The June 2016 issue of Obstetrics and Gynecology includes a study of the conversations between patients and “Health Care Providers” about prenatal genetic screening (PGS). The objective of the study was to “assess how obstetric health care providers counsel patients regarding prenatal genetic screening and how these conversations influence patients’ screening decisions.” PGS refers to blood and ultrasound tests performed early in pregnancy to determine whether a fetus is at high risk for various chromosomal anomalies, especially the anomaly that leads to Down syndrome. Several findings of the study are troubling.

First troubling finding: providers’ counseling of patients about PGS lasts an average of 1.5 minutes.

Second troubling finding: False-positive rates of PGS are discussed so rarely that they could not be reliably analyzed in the study. The false-positive rate refers to how often the screening test is wrong when it suggests that an abnormality is present; when a test says the baby has Down syndrome, but the baby in fact does not have Down syndrome, it is a false-positive. The guidelines of the American College of Obstetricians and Gynecologists suggest that false-positive rates ought to be discussed in counseling about PGS.

But counseling about false-positive rates is itself troubling. The false-positive rate of PGS is somewhere around 5%. Most of us hear this and think, “OK, 95% of the time the test is right when it says that the baby has Down Syndrome.” However, to answer the question, “What percentage of the time is a positive test correct?” you can’t look at the false-positive rate; instead, you have to know something called the Positive Predictive Value. And for PGS, the positive predictive value is only 10%. That means that 90% of the time when PGS says “Down syndrome,” the baby does not have Down syndrome. (Numbers are higher for cell-free fetal DNA testing; however, this test is fraught with its own problems, and the study under consideration here did not include this test.)

Third troubling finding: In 51% of the discussions analyzed, health care providers did not clarify the fact that PGS is not diagnostic. PGS is a screening test, not a diagnostic test. The difference is crucial. Since 90% of abnormal PGS tests are wrong, an abnormal test requires a follow-up procedure to actually make a diagnosis. That follow-up test is usually an invasive test involving a needle into the uterus and a small chance of causing a miscarriage. I have known of several women who didn’t understand the screening nature of the test when they had it performed; when the test came back showing high-risk for a genetic abnormality, they then refused the more definitive diagnostic test. The result was either they spent their entire pregnancy in needless anxiety until the child was born without the anomaly, or they aborted the child on the basis of a false test result.

Why is all of this so troubling? Because medical tests are a big deal. Our understanding — or misunderstanding — of the results of medical tests shape how we see and understand ourselves. And PGS medical tests are a bigger deal than most; because if the results of this study are true, parents are frequently getting cursory explanations (1.5 minutes) from “providers” who give inadequate information about PGS tests. They are then using that (mis)information to make life-or-death decisions for the children they carry. If we’re going to practice eugenics, we should at least make sure that we’re doing so in a fully-informed fashion.

Oh, Those Darned Terms!

In a recent post Jon Holmlund cited Thomas B. Edsall’s op-ed in the New York Times, “The Republican Conception of Conception.” Edsall was referring to the concept that life begins at conception. It is his hope that Republicans either stake a consistent position regarding the morality of post-conception “contraception” and incur the disfavor of the electorate, or abandon their “moral purity” in favor of “pragmatism” and agree that post-conceptional interventions are acceptable.

Edsall’s states it thus:

By this logic, a presidential candidate seeking to live up to the standards set by Sedlak and others in the anti-abortion community must then agree that the IUD and morning after pill cause abortions.

The problem is that Edsall challenges GOP candidates to take an informed and consistent position, while depending on the electorate not to. His strategy relies on manipulative use of terms to produce the opposite of clarity in moral reasoning. First, he speaks of medical interventions described as “contraceptives” that act in ways beyond merely preventing conception. But he does not give them the label “abortifacient” (the proper term for an IUD should be “contraceptive-abortifacient”); the term is simply omitted. That is the best way, of course, to ensure that users of devices such as the IUD are unaware that it may act after creation of an embryonic being.

Such a position is facilitated by ACOG’s definition of pregnancy as beginning at implantation, which Edsall also hangs his hat on. This is a willful dodge. “Pregnancy” refers to the state of the woman. To claim that pregnancy doesn’t begin until implantation fails to refute the notion that an embryonic human being is in existence before then. So the woman isn’t “pregnant”….the human being is still alive, moving toward implantation. And, if the woman isn’t “pregnant” during the time after the embryo is fertilized and before it is implanted, what is her state? Is it not different than before she conceived? Does that not deserve a name? The absence of a name for such a condition is no accident, because the unnamed state is far more difficult to assign a moral status to.

This same “reasoning” behind the proposed bill in the California State Legislature  also recently mentioned in this blog by Jon Holmlund:

“The bill would provide that nothing in its provisions is to be construed to authorize ending a patient’s life by lethal injection, mercy killing, or active euthanasia, and would provide that action taken in accordance with the act shall not constitute, among other things, suicide or homicide.”

So, according to this draft bill, one can take one’s own life and not commit suicide. The attempt to separate the actions that this bill would legalize from the term “suicide” is to attempt to prevent citizens from properly interpreting those actions using the moral values they have already acquired.

Are moral discussions about conception, contraception, abortion, and assisted suicide too painful for our electorate, having what Edsall describes as “its complex views and…pragmatism”? For many, yes, as proven by our unwillingness to clarify the terms needed to elucidate the moral issues regarding medical interventions blocking implantation. However, such discussions are not unwanted by all, but simply unknown to them. Remaining uninformed by the medical profession of the mechanisms of action of “contraceptives,” they are never given a chance to make an informed moral decision. Edsall (to achieve his desired virtue of consistency) would more properly make his challenge to all of us, to demand that each voter take a stance on the morality of embryocidal interventions. It is only then that they could properly interpret the candidates’ responses that Edsall so fervently desires.

A Not-So-Open Discussion

Courtney Thiele posted on March 3oth about an article in the Washington Post describing “a new push to de-stigmatize the nation’s most controversial medical procedure by talking about it openly and unapologetically.” A clinic in Maryland called “Carafem” dispenses abortion pills, and “promises a ‘spa-like’ experience for women with an open and unabashed approach to pregnancy termination.” (quotations from the Washington Post’s article)

This clinic is no doubt trying to move the experience of abortion as far away from Gosnellian horrors as possible. But despite the claims of the owners (and the Washington Post), their own terms reveal that it is not openness they seek, but a façade to hide the truth.

Whenever we hear the term “stigma,” we know that we’re getting lectured about judgmental people who are imposing their bad thoughts, and seeking to infringe upon someone’s freedom. The term in medical use describes a “mark” due to some condition, and therefore a natural consequence and characteristic identifier. In non-medical parlance, it has come to represent an externally imposed non-physical mark, unfairly applied.

For those wishing to deflect criticism, this is a useful word. It serves to convey the impression that if we feel anything negative about an entity or act, it is the fault of external forces, usually having malevolent intent. “Stigma” becomes a surrogate—a strawman—for “guilt” and “shame.” The founders of this clinic, of course, are trying to sell abortion, and trying to blame the guilt that participants may feel on judgmental others.

Most revealing is the clinic staff’s use of a term describing the abortion itself. They dodge the truth when they state how the abortion pill will “pass the pregnancy.” Pregnancy, as we know, is a state of being, not something to pass out of one’s body. It occurs because something is in the body, namely an embryo or fetus. By misusing the term, the clinic staff belies their understanding that the issue is about the human being of the embryo. But, if they acknowledge its being then moral questions must arise, and their goal of casual and stress-free abortion fails. Better to not acknowledge it. Simply talk around it, by substituting a misleading term, and we can pretend there isn’t really a person there.

I’ve seen enough about the coarsening of our culture to have a general sense of pessimism about the ability for many to see through this verbal obfuscation. Still, the sense that a pregnancy is a human is not going to go away, and unlikely to be something the modern public is oblivious to, especially with technological advances in ultrasonography. I doubt that there will be a time when those who take part in abortion are completely free from the burden of guilt, knowing that what they have passed was not simply their condition, but someone on our common path toward birth.

Metaphor: Shopping

Story: a white couple ordered sperm from a sperm bank, stipulating that it be from a white man, for artificial insemination; however, in the delivery room, it was immediately apparent that they didn’t get what they ordered, as their newborn daughter was mixed-race. The couple is now suing the sperm bank for $50,000.

In Tuesday’s Chicago Tribune, columnist Dahleen Glanton wrote a commentary on this story, entitled “In defense of couple suing a sperm bank.”  Glanton’s commentary on the story is particularly illuminating in ways that she probably didn’t intend. Here are some excerpts from her commentary, with italics added by me:

Three years ago [this couple] went shopping for sperm . . . This would be a major purchase for the couple . . . I imagine they felt a little like I did when I bought my first home  . . . two vials of sperm from Donor No. 380. Sold! . . . Who hasn’t gone shopping only to get home, open the bag and find out that you didn’t get what you’d paid for? Under normal circumstances, you’d just return it to the store. But we’re talking about a child here. All sales are final . . . In an instant, [one of the couple] says in the lawsuit, her excitement and anticipation of her pregnancy was replaced with anger, disappointment and fear.

Notice how, in a five-column story on the top of page three in a major American newspaper, Glanton defends this couple’s lawsuit: with the language of consumerism. She writes as if buying sperm to have a baby is analogous to any other major purchase. You comparison shop. You have expectations. If it doesn’t meet your expectations, you take it back (since in this case you can’t take it back, you sue for $50,000). And since you have such expectations, the delivery room can be a place of “anger, disappointment and fear” even when you have a perfect, healthy baby without visible defect.

Glanton was writing to defend this couple’s lawsuit against the charge of racism, not (presumably) to say anything about how we view people in this brave new world of techno-repro. But she seems not even to blink when she uses the language of commerce to write about children, using the analogy of products that must meet certain tolerances or they fill the payor with anger and disappointment. And I’ll bet not a lot of her readers blinked either. What do the metaphors we use say about us? I think our bland acceptance of this one — this one that equates humans with purchases like major appliances or cars or houses — says that we have become so inured to this concept of children as commodities, of procreation reproduction as design according to blueprint, that we have lost the ability to be horrified at what should properly inspire horror. It says that we have laid all the necessary intellectual groundwork for the Brave New World and The Abolition of Man and Gattaca, and they are coming whether we will or no. And that now more than ever we need to act in a counter-cultural manner that respects human dignity, understanding children as made in the image of God, in a culture that is increasingly comfortable with the image of children as inventory.

PGD, BRCA, and the difference between Diseases and Risk Factors: “The lamps are going out . . .”

It is currently estimated that up to 65% of women with the BRCA gene mutation will develop breast cancer. Monday’s Wall Street Journal (WSJ) reported on the growing number of women with the BRCA gene mutation who are undergoing in-vitro fertilization, having the resultant embryos tested for the presence of the mutation via preimplantation genetic diagnosis (PGD), and choosing to implant only those free of the mutation.

PGD has been used for years, typically for parents to selectively implant embryos free of certain genetic diseases — the kind where if you have the gene, you have the disease. It has been occasionally used to select embryos of a certain sex, or embryos with a characteristic such as deafness to match parental characteristics. In other words, it has been used to select out embryos who actually have a disease or characteristic.

The use of PGD mentioned in the WSJ article is something subtly but altogether different. Whereas other uses of PGD select out embryos with a certain disease, screening based on the BRCA gene is used to select out healthy embryos. These are embryos who do not have a particular disease, but who have risk factors for a particular disease.

This is a fundamental distinction. People who have the BRCA mutation are not sick! They don’t have any disease! If they develop cancer, then they will have a disease. But “Having the BRCA mutation” is not a disease! Approximately 35% of people with the mutation will never have the disease associated with the mutation. For the others, preventive measures and treatments are available. (I am not here pretending that the preventive measures and treatments are fun and easy. But they available and mainstream, not experimental.)

The rationale of one person in the article is, “I thought, if I could have a healthy baby who doesn’t have to worry about the same thing I did, why wouldn’t I?” And, “. . . doing PGD to avoid passing on the BRCA mutation seemed like an obvious precaution.” In other words, the decision was a no-brainer.

But if it’s a no-brainer to select out embryos with the BRCA mutation, then it’s equally a no-brainer to select out embryos with genetic predispositions to all kinds of things: heart disease, diabetes, social anxiety disorder, baldness, ingrown toenails, erectile dysfunction . . .

It was at the moment that it became acceptable to profile embryos and weed out those who didn’t meet our arbitrary criteria that we started down this road. I am afraid we will not be able to stop before it reaches its inevitable, logical conclusion. (Seen Gattaca lately?)

 

 

PGD and lives not worth living

A colleague just e-mailed me about an article in Monday’s New York Times titled “Ethics Questions Arise as Genetic Testing of Embryos Increases”. The article focused on the decision of Amanda Kalinsky and her husband to use preimplantation genetic diagnosis (PGD) to have unaffected children after a genetic test at age 26 showed that she had the gene for Gerstmann-Straussler-Scheinker disease, a rare form of transmissible spongiform encephalopathy. The disease is a neurodegenerative disorder that usually has its onset of symptoms between age 35 and 55 and progresses to death within 2 to 10 years. Ms. Kalinsky has multiple family members who have suffered from the disease including her father. The article pointed out that the use of PGD is growing rapidly to allow potential parents with genetic disorders in their families to screen for the disorders and only implant embryos free of the disease. The center that did the PGD for the Kalinskys has tested embryos from over 2500 couples.

The article presented opinions from several ethicists on the morality of using PGD to select unaffected embryos, particularly for disorders that do not become evident until adulthood. They range from Janet Malek from Brody School of Medicine who said that “people who carry a gene like GSS have a moral duty to use preimplantation diagnosis — if they can afford it — to spare the next generation” to David Wasserman from Yeshiva University who pointed out that “eliminating embryos with such genes is essentially saying someone like Ms. Kalinsky should never have been born.”

The most disturbing were the statements made by Ilan Tur-Kaspa the founder of the fertility clinic used by the Kalinskys. He said that couples like the Kalinskys have three choices: do no testing and hope for the best, conceive naturally and have prenatal testing and then choose whether to abort, or do IVF with PGD. He fails to include the fourth option which Ms. Kalinsky originally had considered which is to choose not to have children at all. While several of the ethicists quoted in the article mentioned concerns about doing PGD for diseases that appear in adulthood or for genes that only increase the risk of diseases late in life, Tur-Kaspa was reported to have said that “after having done the procedure a thousand times, he cannot think of a gene he would not test for if a patient requested it.” He also said that in the majority of his patients PGD is done without testing the potential carrier first who does not want to know his or her own genetic status. The embryos are simply tested for the disorder that runs in the family and only unaffected embryos are implanted. He said that “if all the embryos carry the faulty gene, the couple is told that none of their embryos was viable, which can happen with or without a mutated gene.”

The problem with IVF and PGD, particularly when done for diseases that manifest themselves in adulthood or for genes that only confer an increased risk of a disease such as breast cancer, is that the embryos that are discarded are viable. They are just like Ms. Kalinsky was when she was an embryo. As Wasserman pointed out the destruction of such embryos with an unwanted gene is saying that people who have genetic disorders have lives that are not worthy of being lived. The selection of embryos free from a genetic disorder involves the rejection of the embryos who have the disorder. It says to people currently living with genetic disorders and disabilities that it would have been better if their disorder had been found when they were embryos so their lives could have been ended before they were born. Those who practice IVF with PGD need to be honest about what they are doing. They are not discarding nonviable embryos. They are discarding embryos who are expected to grow up into people who have disabilities and not allowing them to live. We should never say that having a disability means that a person’s life is not worth living. None of us is without our flaws. If some lives are not worth living, how can we say that our lives are worth living and theirs are not?