A lesson learned the hard way (update)

Nadya Suleman (a/k/a ‘Octomom’) shares the lessons she’s learned the hard way—with PETA helping her out, too.

Nadya Suleman is the infamous single California woman at the center of an ethical firestorm because of her use of assisted reproductive technologies to implant IVF embryos and carry 8 babies, all at once, to term.  In addition to this, she had 6 children at home, all brought into being with the help of IVF.  Her actions and the actions of the physician who implanted 6 embryos (2 split to become twins) prompted an outcry in the medical ethics community, prompting questions such as “How far does reproductive autonomy go?” and “How many children is too many?”

As I had noted in a blog entry here previously, there are multiple ethical considerations at play when an IVF specialist is approached by any woman and a ‘burden vs benefit’ analysis is employed. IEET Fellow George Dvorsky blogged: “By implanting 8 embryos in a mother predisposed to multiple births, they put her health at risk and they significantly increased the likelihood of her introducing a multiplicity of babies into a family that was already over-extended.” Bioethicist Art Caplan noted that “Society is getting stuck with the bill when she made this choice to be an infertility patient; It is more than her interests. It affects her kids and it affects the rest of us.”  The media attention to this case prompted medical ethicists to question the adequacy of ART (Assisted Reproductive Technologies) oversight: the American Society for Reproductive Medicine convened a conference to start a dialogue on this issue and a summary of discussion can be seen here and here. Fortunately, more than a year out, this case has turned out to be a real outlier and does not represent a trend in the ART industry.

And since then, Nadya Suleman has expressed deep regret at her decision—the costs have been extreme; the home in which she is living is being threatened with foreclosure and the impact of her decision is now coming down to bear heavily.  And as ticked off as everyone was at her and her IVF physician, no one I know thinks that her children should suffer more for her bad decision.  And, fortunately, most Americans (I would like to believe, anyway) have the heart to forgive someone who admits they have screwed up—and we love to hear stories about redemption.

And the redemption here is that the Associated Press has reported that Nadya Suleman (a/k/a ‘Octomom’) doesn’t want your pet to suffer the same fate:  PETA has negotiated a deal with the Ms. Suleman that allows them to post a PETA sign in her front yard trumping the value of spaying or neutering pets. The deal was in exchange for a one-time payment and a month’s worth of veggie burgers and veggie hot dogs for her and her children. The full story can be seen here.
Sounds like a win-win situation to me.

[Cross posted over at the IEET blog]

Samantha Burton's Ordeal at Tallahassee Memorial Hospital

Well, Tallahassee Memorial Hospital is at it again – that is, forcing a pregnant woman to undergo medical treatment against her will.

You might remember the case of Pemberton v. Tallahassee Regional Medical Center (now Tallahassee Memorial Hospital), in which Laura Pemberton was forcibly taken from her home in active labor, put in an ambulance, taken to the hospital, and made to undergo a court-ordered cesarean.  Ms. Pemberton’s “crime”? She was trying to have a VBAC at home, attended by a midwife after no physician would attend her at the hospital.  While in labor, she went to the hospital for some IV fluids.  The doctor refused to give her the fluids, and insisted that she get a cesarean. She returned home. The hospital obtained the court order to return her back to the hospital and have a cesarean against her will. That court order was (erroneously) upheld by the federal district court in Pemberton v. Tallahassee Regional Medical Center, 66 F. Supp.2d 1247 (N.D. Fla. 1999).  

This time around, in March 2009, Tallahassee Memorial Hospital saw fit to obtain a court order to force Susan Burton to be indefinitely confined in the hospital and made submit to any and all treatments deemed necessary by her physician, Dr. Jana Bures-Forsthoefel, for the benefit of her fetus.  The doctor was concerned that Ms. Burton, a mother of two children who was suffering pregnancy complications at 25 weeks, was at risk for premature labor, and also smoked during pregnancy. 

Under the court order, Ms. Burton could conceivably have been confined to bed rest and made to undergo ordered medical treatments for 15 weeks, until her due date. Sadly, her baby was delivered stillborn by emergency cesarean 3 days later. 

Ms. Burton’s request to change hospitals and get a second opinion was denied by the Leon County Circuit Court.  She was not represented by a lawyer, and had to argue her own case to the judge by phone from her hospital bed. 

Fortunately, Ms. Burton is now being represented by a lawyer, and has appealed the Circuit court’s order that in essence treated her as a fetal incubator, made to stay in bed and submit to any treatments her doctor saw fit.  In January, oral arguments in the appeal were heard before the Florida First District Court of Appeals. 

 On appeal, Ms. Burton argues, along with the Florida ACLU as amicus curiae, that the lower court wrongly applied the state’s “parens patriae” interest (which allows the state to act in the “best interest” of an already born child) to the fetus. By applying that standard to a fetus instead of a born child, the court completely ignored Ms. Burton’s own state constitutional interests at stake in the case – her critical interests in protecting her bodily integrity and privacy.  

 The state attorney in this case, Willie Meggs, who was also involved in the Pemberton case, shows little concern for the bodily integrity and rights of pregnant women. The actions of the hospital and Dr. Bures-Forsthoefel fly in the face of ethical recommendations made by both ACOG and the AMA, that pregnant women should not be forced to submit to medical treatment to benefit the fetus.  And the court ruling is inconsistent with those of other courts. 

The Burton case is a cautionary story—a woman goes to her doctor with complications in her 25th week pregnancy, only to be told she cannot leave (even with two young children at home), cannot get a second opinion or go to another hospital, and must stay confined there indefinitely, as her doctor orders.  If the decision is allowed to stand, pregnant women risk being “medically kidnapped,” as one blogger put it, if their behavior is not deemed best for the fetus. All pregnant women, at least in the Tallahassee area, should be on notice that they are fair game for over-zealous hospital lawyers and physicians who fail to see pregnant women primarily as persons with constitutional rights, but instead as fetal gestators who can be forced to “behave” as they see fit.

[Our guest blogger this week is Kathy Taylor, JD, PhD, is an Associate and Lecturer at the Center for Bioethics at the University of Pennsylvania School of Medicine.  You can see more about her background here.]

Octuplets Mother Speaks Out

Nadya Suleman, mother of the recent octuplets born in California, has done her first interview with a major news outlet. (Although Suleman was seeking USD 2 million for the interview, NBC maintains that they did not pay her. However, that doesn't rule out "compensation" in other forms.)

Unfortunately, Suleman's interview has continued to raise, rather than answer, questions. Foremost among them, for me, is her claim that she had six embryos implants per IVF procedure. This... simply does not ring true. Or at least plausible, if she was using a US fertility expert.

Consider this: in order to have done so, this means Suleman would have needed to find, at age 26, a fertility doctor who would implant six embryos. ASRM guidelines are no more than 3 embryos for a woman under the age of 35, and that's if she has a history of problems with conception. With a 'clean' history, only 2 embryos are recommended. Now, it sounds like Suleman might have qualified as having difficulty conceiving, with several ectopic pregnancies and miscarriages prior to IVF. But even accounting for that, it's double the recommended standard. For each pregnancy.

But stop to do the math. While one vial of donor sperm would be more than enough for all of this, it means that they collected at least 36 eggs from Suleman, and that all of those eggs were viable enough to implant once fertilized. Realistically, not every egg retrieved is going to be mature, and not every egg is going to fertilize (unless you're using something like ICSI). Realistically, you're looking, at the very least, at 1/3rd more eggs than that being pulled out (and even that is a very, very low number - remember, they're saying that there were six viable eggs to implant per cycle. A quick web search shows that 1/3 of the eggs removed at any time are not mature, and of the ones that are mature, only half reach the point of being "good enough" to implant).

Now let's go over to CDC stats. While the last data is from 2005, which was going on 5 years ago, Suleman started her IVF course in 2001, so some of this data is specifically applicable (and some of it only extrapolation). According to the CDC, only 35% of ART cycles resulted in a pregnancy, and of those, 82% resulted in a live birth. So again, Suleman seems to have defied the odds. A lot. And as the CDC says about frozen eggs, "[b]ecause some embryos do not survive the thawing process, the percentage of thawed embryos that resulted in live births is usually lower than the percentage of transfers resulting in live births." While only 15% of embryos transferred were frozen, of those 15%, only slightly more than 1/4 ended up in live births.

Again, the odds make this seem incredibly unlikely.

Finally, fertility clinics are required by law to report their ART data, under the Fertility Clinic Success Rate and Certification Act. This gives us a decent way of tracking ART results - and also who is doing ART. In 2005, eleven clinics in California did not report their ART data (which would include embryo transfers/live birth data/etc). Of those eleven places, it looks like seven were within an hour of her home (keeping in mind her back injury likely limited the distance she could travel). Of the clinics that did report their data, 35 are within an hour of Whittier, California. However, given these clinics are compliant with reporting their data, it seems safe to eliminate them from immediate suspicion. (As for the potential Mexcio connection, Tijuana is approximately two hours away. Certainly not out of the question; an hour was a random number drawn from thin air. Suleman has certainly shown herself to be willing to go to significant length, and pain, to achieve her goals.)

All in all, what does this mean? Not much. Over 300 pages of records on Suleman have been released to the press, under a public records request to California's Division of Workers' Compensation. While it doesn't appear that the fertility clinic (or doctor) that treated her is in those records, there is ample evidence to support that she did have problems conceiving, and that she had known psychiatric issues, including what was diagnosed as either postpartum depression or PTSD. Issues that should have limited, if not prevented, future implantations.

Ultimately, until Suleman names her doctor, or said doctor speaks out, little will be conclusively known. But the facts remain simple: the facts do not add up.
-Kelly Hills

More on the Octuplets

Our friend and supporter, Art Caplan, sheds some more light on the ethical implications of the octuplets in his Philly op-ed:

"Something has gone terribly wrong when a 33-year-old single woman - who has no home of her own, no job, and a mother who worries her daughter is "obsessed" with having children - winds up with 14 of them. And all are under age 8, including eight newborn babies now in a neonatal nursery in various states of prematurity.
Examining what exactly went wrong may shed some light on what ought to be done. If doctors cannot prevent such a shambles from recurring, then society must.

The woman in question, Nadya Suleman, lives with her parents in a small home near Los Angeles. She has had infertility problems linked to blocked Fallopian tubes. She can make eggs, but they cannot be fertilized naturally because of the blockage.

Suleman apparently used donated sperm and in vitro fertilization to create all the embryos that became her children. She underwent treatment to cause her to produce many more eggs than the normal one per month, and they were surgically removed from her body and fertilized in lab dishes. Some of the resulting embryos were put back into her body, and that is how her first six children were made.

Unhappy with only six, Suleman sought further fertility treatment and had an additional eight of her embryos defrosted and implanted. They produced the now famous octuplets who, after a Caesarean section, are in intensive care at Kaiser Permanente Medical Center in Bellflower, Calif. Sadly, there is no known case of octuplets in which all escaped severe disabilities.

The most obvious questions raised by this sad saga include: How did Nadya Suleman become a fertility patient? And how did she get eight embryos implanted when she already had six young children to care for in a tiny house, with no partner and no income?
Some fertility doctors would answer that it's not their job to decide how many children a person can have. Jeffrey Steinberg, medical director of the Fertility Institutes, which has clinics in Los Angeles, Las Vegas and New York City, was quoted as saying: "Who am I to say that six is the limit? There are people who like to have big families."

James Grifo, a renowned fertility specialist at New York University, had little time for those wondering why Suleman was a patient. "I don't think it's our job to tell them how many babies they're allowed to have," he reportedly said. "I am not a policeman for reproduction in the United States."

With all due respect, the idea that doctors should not set limits on who can use reproductive technology to make babies is ethically bonkers.

If someone comes to a clinic with a history of child abuse, active drug addiction, and a rap sheet with serious felonies, should the doctor simply say: "If you have the money, I will make all the babies you want"? That gives cash and carry a whole new meaning.

Doctors have an obligation to consider patients' requests for treatment, but they do not have to honor them. One very good reason not to do so is if a doctor believes that what the patient wants would put children at grave risk.

Putting eight embryos into a woman is exactly that - putting kids at grave risk. Putting eight babies into the family of a single mom already trying to cope with six other young kids, with no money and little help, is putting kids at grave risk. The doctors who allowed Nadya Suleman to receive multiple embryos engaged in grossly unethical conduct.

The other major ethical problem raised by this story is the hijacking of health-care dollars by someone acting irresponsibly.

Suleman had to know that starting a pregnancy that might create eight tiny lives was to risk killing herself, as well as killing or severely disabling one or more of the babies. Fortunately, she made it through the pregnancy. But the cost of neonatal care for her eight new children probably will exceed $1 million.

When they are discharged from intensive care, more millions of dollars in medical costs likely await, not to mention the help Suleman will need just to handle all of her children's basic needs.

Society needs to discourage mega-multiple births. And it is clear what needs to be done to accomplish that.

If the medical profession is unwilling or unable to police its own, then government needs to get involved. We already have rules governing who can get involved with adoption and foster care. Shouldn't these minimal requirements be extended to fertility treatment? And shouldn't some limit be set on how many embryos can be implanted at one time, along with some rules about what to do with embryos that no one wants to use?

Other nations, such as Britain, keep a regulatory eye on reproductive technologies and those who wish to use them, knowing their use can put kids at risk in ways that nature never envisioned. We owe the same to children born here."

Original article here.

Reproductive Autonomy Runs Amok

In a follow-up post to Kelly's previous post, it seems that Nadya Suleman's use of IVF technology is clear misuse and abuse of ARTs (Assisted Reproductive Technologies). The doctor who implanted the embryos should be investigated, because in helping this woman become pregnant with 8 children, he or she violated one of the basic tenets of medicine -- "Do No Harm". Hopefully, the Board of Medical Licensure will investigate and determine what the possible motivation was for this doctor's actions, whether it was a one time lapse in judgment due to extreme personal difficulties, or if it represents a small part of a larger pattern of unethical behavior and practice for the doctor and the fertility clinic.

There are multiple ethical considerations at play when an IVF specialist is approached by any woman and a 'burden vs benefit' analysis is employed. When someone who has already had six children through the procedure seeks more, I cannot imagine a valid or justifiable benefit -- the burdens include physical and financial costs to the mother (who has already declared bankruptcy), to the grandmother, to the siblings, to the children born, and to society. And while one might argue that this is an exercise in reproductive autonomy, we, as a society need to ask 'how far does reproductive autonomy go?' Does it include the right to create children who been disabled or dis-enhanced? (A nightmare scenario vaguely reminiscent of Dean Koontz' novel, One Door Away from Heaven). How we answer this question will have an impact on how we deal with future cases, such as those involving genetic engineering.

Hopefully, this case will call attention to the need for regulation and oversight of Assisted Reproductive Technologies. Currently, we have a laissez-faire attitude towards ARTs and fertility clinics; we have trusted the doctors and clinics to regulate themselves, via the American Society for Reproductive Medicine --and this case demonstrates that we can no longer simply turn a blind eye.

How Many is Too Many?

Unless you've been hiding under a rock this last week, you're aware of the octuplets born to California single mom Nadya Suleman, and the intense ethical debate surrounding her pregnancy. Even before it was revealed that she has six other children (apparently all from IVF, although details are a bit fuzzy), medical experts were ready to lynch the IVF specialist who implanted that many embryos into Ms. Suleman. And since then, the information that has come out has been more and more dismaying. The problem is, much of the information coming out is still speculation, and few solid facts are known. This makes it difficult to do more than speculate and contribute to the signal to noise ratio, which at the moment is definitely loudly on the side of noise.

So rather than continue to discuss the particulars of Ms. Suleman's case, which will have to be dissected in its own due time, I want to open to forum to a related question that has been repeated in the discussion of her story: how many children is too many children? Not how many implanted embryos is too many embryos, but at what point (if any) do fertility doctors say sorry, no more kids? Should Ms. Suleman have had any embryos implanted at all, given her six other children? Or is the ability to pay for IVF the only thing that should be considered? Should the financial state of the individual or couple be considered? Job? Income? What factors should go into deciding whether to treat for infertility via IVF? And should the "how many is too many" question be posed to adoptions, as well (Angelina Jolie and Brad Pitt clearly coming to mind)?

Or put another way: is the problem with the birth of the octuplets the fact that they were born all at once, and if Ms. Suleman had continued to quietly have eight more children via IVF, no one would have said a thing?

It seems like this single question - if an outside source is utilized to have children, is there a point at which it can be determined that the person has too many children to have more - is fraught with the potential of paternalism and of violating the choice of family construction.

I don't even begin to have an answer to this; I doubt I've even begun to tease out all of the potential questions wrapped in what is an incredibly thorny issue. But let's open it to debate - what do you think?
-Kelly Hills

On Ending Periods...

American Journal of Bioethics' Editor-in-Chief Glenn McGee writes a thoughtful, fascinating. and provocative column on human nature and the end of periods in the Scientist today:

"For decades, fertility research has successfully decoupled sex from reproduction, forever altering women's position and power in the developed world. Among all methods of contraception, none is as well known or influential as 'the pill.' Now, its power has been kicked up a notch, and the pill is poised to do what some say will disrupt the very nature of the XX sex. This leaves us with one question: In the next step of the evolution of women's contraception, should we eliminate the last major physical manifestation of the reproductive cycle, menstruation?"

For the complete article, click here. And to let us know what your thoughts are on this matter, take our survey (to the right) or comment here on our blog.

The Question of Embryos and Legal Status

What constitutes 'a person' under the law? At first glance, this seems such a simple question; however, the more I think about this, and the more I investigate, I am realizing that there is not a clear answer. There clearly has not been a consensus amongst the legal and scientific communities.

Recently the Los Angeles Times examined the issues surrounding leftover frozen embryos. Many couples in the United States with frozen embryos leftover from fertility treatments are “finding themselves ensnared in a debate about when life begins”. These couples have three choices: discard them, donate them to research or donate them to another couple for potential pregnancy. There are initiatives in several states that seek to protect embryos. One of these initiatives defines a fertilized egg as a person in the state constitution (Colorado). Indiana lawmakers are proposing an allowance for leftover frozen embryos to be adopted for implantation by another couple. New Jersey legislators have proposed allowing unused embryos to become wards of the state, and Georgia and West Virginia are considering legislations that would grant embryos “personhood status”. This is a very slippery slope; for, if the Supreme Court allows these proposals, one would be in a position to say all abortions must stop.

Roe v. Wade is the historic Supreme Court decision overturning a Texas interpretation of abortion law and making abortion legal in the United States. The Roe v. Wade decision held that a woman, with her doctor, could choose abortion in earlier months of pregnancy without restriction based on the right to privacy. At the time of this decision, it was clear that an embryo was not a “person”, or abortion would have been “murder”; thus illegal. In Davis v. Davis the lower court found that “human embryos are not property, and human life begins at conception”. However, the Supreme Court of Tennessee overruled this by saying something quite different, that embryos occupied a special status of “quasi-property”. Most recently, the Oregon Court of Appeals has ordered six frozen embryos be destroyed after ruling they can be treated as personal property in a divorce.

So, in essence, it remains unclear in the scientific world “when life begins”, but in the “legal world” it is quite clear that embryos are not “persons under the law” (yet). In fact, at this time it appears embryos are simply “property”! Did I answer my own question? Embryos are life forms, but not persons?

Genetic DisEnhancement -- Does reproductive autonomy extend to choosing a disability?

From the UK Telegraph today, deaf couples could be allowed to screen their embryos in order to select a deaf child after protesters persuaded the Government to remove references to deafness from the proposed Human Fertilisation and Embryology Bill.

I can appreciate (although not necessarily agree with) the stance that tampering with any embryo is 'playing God.' Similarly, I can appreciate the arguments that genetic enhancements pose concerns in terms of creating inequities and in terms of eugenics. But I have difficulty understanding, much less appreciating, the argument that a couple should be allowed to genetically 'disenhance' their child. I understand that some deaf couples argue that deafness is not a disability, but rather "being part of a linguistic minority." But maybe it is because I spent too much time in the Rhode Island State House as legislative counsel in the 80's and 90's listening to the testimony of Deaf Advocacy groups lobbying to make sure that public services complied with the Americans with Disabilities Act. I have difficulty reconciling that deafness, under the law, is a recognized disability, but for the purposes of reproductive autonomy, it is not?

My concern about removing the clause banning the creation of disabled children entirely, is why stop at deafness? Aren't the primary purposes of medicine to heal, to cure diseases, restore, and alleviate suffering? One commenter suggests, by way of a 'wrongful birth suit', the imposition of legal liability on the part of the parent to any offspring deliberately brought into the world with less than the normal range of faculties.

So the question is how far does reproductive autonomy go? Nobody wants to see a fellow human being struggle or suffer, especially in the name of 'reproductive autonomy.'