Maya Sabatello: "Controlled Parenthood" [CFI conference on biomedical enhancements]

Maya Sabatello is presenting on controlled parenthood and asks: Are the rights and interests of children being considered when using reproductive technologies?

Sabatello includes such repro-tech as PGD, IVF, gender selection, and so on. The influence on the family institution is "tremendous." It has led to a real change in demographic patterns on family structure. A real boon to those couples who would have normally been infertile. Can also help single mothers, older parents, same-sex couples, and so on.

Assistive repro-tech decisions become a collective effort, and extends beyond the prospective mother and father.

Impact on children include an introduction to a world with increased pluralism. Also, genetic commonality varies depending on the type of repro-tech used (e.g. a child can have three genetic parents). The demography is changing, lots of twins and multiple-births. Children can be born to have specific genetically compatible tissue. Cloning may introduce other options and demographic shifts in the future.

Access to assistive repro-tech is based in specific laws and charters around the world. But what are the limits of using these technologies? Are part and parcel of one's right to found a family. A part of human identification and realization.

Also part of other sociological realities -- e.g. the mother who holds of having children while she establishes a career.

Because parents would have to bear the emotional, financial, and other burdens of raising a disabled child, they deserve the right to access these sorts of these technologies.

But opposition to such broad-strokes of parental freedom exists, including ideas of gender equality, access to healthcare, etc. Some believe that the state has no business ensuring that their citizens have access to repro-tech.

Sabatello feels that some courts are ignoring the interests of children in all this. We need to examine this.

A child-centered approach: There is very little information, unfortunately. Not much to go by, but we have to start investigating.

One argument is that a child deserves a right to an open future. They have some rights in trust, and deserve adult protection until they're of age. This can have an impact on non-traditional arrangements, such as gay parenting.

What about deafness and dwarfism by choice? Is the child better or worse off? Bit of grey area here.

Do some rulings put parental needs in opposition to children's needs? What about thinking of group rights and thinking about the needs of the family as a whole? International rights don't really dwell in this area, but perhaps they should perceive the family as a unit.

We need to figure out how the child's voice can inform the process. Thus, a child-center approach.

Has to start from pre-considerations:

• They don't have the capacity for informed consent
• We also need to take their web of relations into consideration (what's the context?)
• We need to re-conceptualize the notion of autonomy - children's autonomy in relation with others, and can exercise rights in relation to others (as a matter of identity); only space in which a child can express their interests and rights

Is the selection of genetic characteristics medically justified? Can they lead to greater risk of side-effects and defects? We need to educate parents about disability and suffering; inform them about difference between suffering and a disability. These are often social constructs of a specific society.

Unlike adults, children do not view disabilities as abnormal. What matters is how they are treated and the attitudes that are expressed towards them. Some children attribute their 'disability' as a part of their social background more than, say, ethnicity. 

Protection of identity is crucial, and is protected by charter of rights. 

Connection between genetic characteristics and genetic identity. Can this someone impact negatively on a child? E.g. disabled identity? Gender identity? Savior sibling? Is there a less sense of worth? Living in the shadow of the other siblings? 

But too many biological factors are being considered here. What about sociological factors? How are they being socialized and treated by society? Take savior siblings, for example, in which those children are just as loved as any other. 

Stats: No differences in identity were found among children raised by hetero or gay couples. 

Children are born into a reality--the only one they really know.

The genetic tie to the family is weak, and does not matter as much as other factors like ethnicity. 

A greater appreciation of the child's voice should be increasingly considered.

Bailey: IVF goes from yuck to yippee!

Ronald Bailey tells us what this year's Nobel Prize for a test tube baby pioneer tells us about the moral endorsement of technology:

At long last, in vitro fertilization pioneer Robert Edwards has been awarded a Nobel Prize. Back in 1978, his research with his colleague Patrick Steptoe led to the birth of the world’s first test tube baby, Louise Joy Brown. The public (and makers of public policy) initially reacted to Edwards’ research with moral horror. However, once he and Steptoe had succeeded in producing a healthy baby girl, revulsion swiftly turned into wide approval and ethical acceptance.

In 2001, when Roberts was given the prestigious Lasker Award for medical research, biochemist Joseph Goldstein quipped, "We know that IVF was a great leap because Edwards and Steptoe were immediately attacked by an unlikely trinity—the press, the pope, and prominent Nobel laureates." Edwards’ scientific career traces out the ethical arc that characterizes reaction to much technological progress during the last century—initial fear and loathing followed by a warm embrace. Yuck followed quickly by yippee.

In 1969, a Harris poll found that a majority of Americans believed that producing test-tube babies was "against God's will." In 1970s, the federal government imposed a moratorium on federal funding of in vitro fertilization research and legislation that would have outlawed IVF was considered by Congress. Yet just one month after the birth of Louise Brown, the Gallup poll reported that 60 percent of Americans approved of in vitro fertilization and more than half would consider using it if they were infertile.

Advances in biomedicine—especially those that touch most closely on birth and death—have been the most ethically fraught. A lot of moral struggles have centered on control over reproduction. Let’s set aside the long fight over abortion and look chiefly at a couple of the other moral struggles over fertility control, contraception and artificial insemination, as examples of this process of progressive moral endorsement.

Read the entire article.

IVF not entirely safe

The New York Times is reporting that in vitro fertilization (IVF) may not be as safe as typically assumed:

...some studies indicate that there may be some abnormal patterns of gene expression associated with IVF and a possible increase in rare but devastating genetic disorders that appear to be directly linked to those unusual gene expression patterns. There also appears to be an increased risk of premature birth and of babies with low birth weight for their gestational age.

Entire article.

When 8 is more than enough: It's time for some meaningful regulation

Like a lot of people last week, I was shocked to find out that Nadya Suleman, the mother of the octuplets born last week in Los Angeles, already has 6 children -- all between the ages of 2 and 7.

And that she is a single mother who has already filed for bankruptcy, and that she is a self-described "professional student" who lives off education grants and parental money.

And that she has a psychological condition which compels her to keep wanting to have more babies.

Now, I'm a huge advocate of reproductive freedoms and equal access to repro-tech, but something clearly failed to happen here. In this case, the fertility clinic that performed the procedure failed to exercise both restraint and common sense. They also showed a complete disregard for guidelines -- a strong indication that, while regulation exists for repro-tech procedures, it's not being enforced strongly enough. This needs to change.

Questionable practices

First off, it sounds like Suleman should have failed the screening test. Prospective parents must undergo an evaluation of their psychological and sociological circumstances before qualifying for IVF treatment. According to R. Dale McClure, president of the American Society for Reproductive Medicine, an investigation had started into the case, but that: "Concerns for confidentiality preclude us from making any additional comments at this time."

Would it be unfair of me to interpret this as an acknowledgment that their investigation failed to raise the necessary warning flags? Or that they lacked the resolve to act on them?

Again, I don't mean to bemoan the desire of some parents to have large families, but it appears that there were extenuating circumstances in this case that would should have precluded the mother from having more babies, namely her questionable mental state and motives for wanting to have more children.

This is more than just an issue of procreative liberty -- it's also a quality of life issue for those children being introduced into the world.

Given that Suleman passed the screening test, it would appear that the assessment criteria and investigative processes should be overhauled

Second, the fertility clinic implanted (at least) 8 viable embryos. Most (responsible) clinics will only implant a pair of embryos to reduce risk (both to mother and children). And this is made all the more troubling considering that Suleman has already delivered twins; the fertility clinic knew she had a predisposition for multiple births, yet they didn't adjust their treatment accordingly.

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.

According to Michael Tucker of the Georgia Reproductive Clinic, Atlanta, clinics are policed by the American Society for Reproductive Medicine, which frowns upon implanting more than two or three embryos at a time. "It is remarkable," says Tucker, "that any practitioner would undertake such a practice."

Well, it would only have been remarkable if the ASRM had the teeth to enforce their policies. If the Suleman case is any indication, their reach and influence is insufficient.

Regulation is only regulation if it is enforced

Looking at this case one gets the feeling that some fertility clinics look upon their patients as nothing more than customers. Given the nature of their work, however, this attitude will simply not do.

A lassez-faire approach to repro-tech won't work to protect the interests of those hoping to use these technologies and to protect those lives that are created as a result. I agree that regulation should be very liberal and accommodating to a diverse set of interests, but complete de-regulation would be both dangerous and facile.

But establishing regulations and guidelines is one thing, enforcing it is quite another.

In some cases, this one included, it would be perfectly reasonable for the state to intervene and deny access, or at the very least compel clinics to follow a strict set of guidelines to prevent this sort of thing from happening. It's time to empower groups like the ASRM -- particularly now as new reproductive technologies are emerging quickly. This way, fertility clinics will be compelled to follow the rules and be held accountable for their actions.

It's clear that this has to happen. Clinics won't regulate themselves.

But why should we have expected them to? They're not the ones who now have to raise these children.

Most people favor reproductive technologies -- but not sex selection

A recent poll conducted in 15 countries by the BBVA Foundation shows that citizens in the developed world are largely in support of assisted reproductive technologies. In particular, most people polled were very much in support of in vitro fertilization, a technique used to help couples with fertility problems (scoring over 7 points on an acceptance scale from 0 to 10). At the same time, however, there was strong disapproval for using the technique to choose a baby's gender, with scores consistently showing below 3 points.

In fact, preimplantation genetic diagnosis (PGD) -- a genetic test that can be carried out on the embryos obtained from artificial fertilization in order to select those to be implanted in the uterus of the future mother -- scored much higher in acceptance than sex selection. But that said, when it was considered as a technique to screen for gender, PGD was flatly rejected for that purpose.

What is it about sex selection that gives cause to such rejection?

For me this is a no-brainer. Couples in the developed world, where gender discrimination and biases are less prominent, should be allowed to use gender selection for family balancing purposes. I'm absolutely flabbergasted that this is still not a right in some countries, including Canada where couples and their doctors face the threat of large fines and jail terms.

Admittedly, not all countries are ready for sex selection; India and China certainly come to mind. But that's not our problem, nor is it an indication of how sex selection would be used here. The idea that sex selection would significantly skew the gender balance here in the developed world is terribly misguided and not based on any real evidence. Given the 2 children per couple tendency, it's highly likely that most couples would opt to have a boy and a girl.

Another argument against sex selection is that it is prejudicial by its very nature -- that the very presence of preference indicates that gender biases exist and will continue to be reinforced. While this is a more nuanced argument, it fails to take into account an undeniable aspect of the human condition: we are a gendered species and gender differences do in fact exist.

A consequence of these differences is the rise of preference. We are a subjective and pragmatic species; we favor situations in which we have better control over our lives and our choices. Moreover, is it so wrong for a couple to want to have a girl, for example? Why should they be faulted for that? Why is preference in this case considered so evil? What about other morphological or psychological traits? Is it acceptable to screen for those characteristics, but not gender itself?

Until we truly get over gender in the biological sense, we need to re-acquaint ourselves with the realities of our gendered condition; we need to speak to the unique needs of male and female psychologies and biologies. And as long as we have laws and social norms that protect women (and men) from discrimination we shouldn't have to worry too much about any kind of prejudicial thinking stemming from couples who simply want to choose a boy or a girl.