Mary Meets Dolly

"There were 1,942 recorded incidents of disability hate crime in England and Wales in 2011, an increase of more than 25% on the total for 2010 and the highest since this data was first recorded.... Data obtained under the Freedom of Information Act shows the number of recorded incidents grew by 60% between 2009 and 2011."
--The Guardian

"Advocating for abortion for unborn children with various diseases and disabilities in order to “spare them a life of suffering” suggests that one must be perfect in mind and body in order to have a fulfilling life, which sends a message to those of us poor fools living with disabilities outside the womb that you do not think that our lives are worth living."
--Chelsea Zimmerman, Reflections of a Paralytic

And, in fact, each bill that arrives in the mail is a step closer to that foreboding 10-year mark when we'll have to decide the blastocyst's fate, as is the case under NSW and Victoria's assisted reproduction laws. Strange, but it feels almost as if we're being asked to choose a favourite child....

Of course, it breaks my heart. All I know is that, with each passing year, this trembling promise of a life becomes more and more a measure of my vacillation and despair.

They are spending up to £30,000 a time on trips to New York, to guarantee a boy or a girl, according to a clinic.

Clients include senior British politicians, claims Dr Jeffrey Steinberg, the Cambridge-trained IVF specialist who heads the Fertility Institutes clinic in Manhattan....

However, sex selection for social or ‘family balancing’ reasons was made illegal in the UK in October 2009, after the government amended the Human Fertilisation and Embryology Act 1990.

Under the legislation, sex selection is only allowed for medical reasons, such as to avoid the risk of a child being born with a sex-linked genetic disorder like Duchenne muscular dystrophy, which only presents in boys. Similar laws exist in many other countries.

No such stipulations exist in many US states, with IVF clinics there seeking to capitalise on a growing desire among wealthy couples from around the world to design their families rather than leaving it to chance. Speaking to the Evening Standard, Dr Steinberg, who trained alongside IVF pioneer Robert Edwards at the Bourne Hall Clinic, which is linked to Cambridge University, said 15 per cent of clients at the New York centre were British....

[Steinberg] admitted clients from some countries were almost exclusively interested in boys. Demand from China - currently under pressure to revoke its controversial one child policy - was 98 per cent for boys, he said, while from India it was 97 per cent.

A clinical trial being conducted by the Sutter Neuroscience Institute in Sacramento, California to address this situation began recruiting participants today for a highly experimental stem cell therapy for autism. The institute plans to find 30 autistic children between ages 2 and 7 with cord blood banked at the privately-run Cord Blood Registry, located about 100 miles west of the institute....

A major difference between the Sutter trial and those in China is that his will use the child’s own stem cells, rather than those from a donor. Chez hypothesizes that one way autologous stem cell infusion might work is by reducing inflammation within the body’s immune system. This would answer previous research that suggests that autism may be an autoimmune disease. “One of our exploratory goals will be to look at inflammatory markers in cells,” he says.

The study’s primary goal, however, will be assessing changes in patients’ speaking and understanding of vocabulary. For each individual, researchers will create a baseline benchmark that establishes current skill levels. The group will be evenly divided, with one initially receiving an infusion of their own, unmodified cord blood stem cells and the other a placebo treatment of saline injection. Six months later, all of the children will be tested on their ability to comprehend and form words. The groups will then be switched. In the course of the 13-month-long study, both groups will receive only one stem cell therapy infusion.

...if germline manipulation actually does begin, it seems likely to set off a kind of biological arms race....  Of course, the problem with arms races is that you never really get anywhere. If everyone's adding 30 IQ points, then having an IQ of 150 won't get you any closer to Stanford than you were at the outset. The very first athlete engineered to use twice as much oxygen as the next guy will be unbeatable in the Tour de France - but in no time he'll merely be the new standard. You'll have to do what he did to be in the race, but your upgrades won't put you ahead, merely back on a level playing field.

...So let's say baby Sophie has a state-of-the-art gene job; her parents paid for the proteins discovered by say, 2005 that, on average, yielded 10 extra IQ points. By the time Sophie is five, though, scientists will doubtless have discovered ten more genes linked to intelligence. Now anyone with a platinum card can get 20 IQ points, not to mention a memory boost and a permanent wrinkle-free brow. So by the time Sophie is twenty-five and in the job market, she's already more or less obsolete - the kids coming out of college just plain have better hardware.

...The vision of one's child as a nearly useless copy of Windows 95 should make parents fight like hell to make sure we never get started down this path. But the vision gets lost easily in the gushing excitement about "improving" the opportunities for our kids.

If germline genetic engineering ever starts, it will accelerate endlessly and unstoppable into the future, as individuals make the calculation that they have no choice but to equip their kids for the world that's being made. Once the game is under way, in other words, there will be no moral decisions, only strategic ones. If the technology is going to be stopped, it will have to happen now, before it's quite begun.

Then:

"The exposure of the sick, weak, deformed children, in short, their destruction, was more decent and in truth a thousand times more humane than the wretched insanity of our day which preserves the most pathological subject, and indeed at any price, and yet takes the life of a hundred thousand healthy children in consequence of birth control or through abortions, in order subsequently to breed a race of degenerates burdened with illnesses."

-- Adolf Hilter, praising the Spartan practice of disposing of any weak or deformed babies

Now:

"She did a disservice to every woman in America. She knew from the first month of pregnancy that kid was going to be Down's Syndrome. It's brain dead. A virtual vegetable. She carries it to all these different political events against abortion, she did it just because she didn't want to say she'd had an abortion. How long is it going to live? Another 12, 15 years? Doesn't even know it's in this world. So what kind of compassionate conservative is she?"

-- Larry Flynt, pornographer, on Sarah Palin's son Trig who has Down Syndrome

Timeless:

"Some people misunderstand evil and believe it will relent, and because their misplaced hope inspires dark hearts to dream darker dreams, they are the fathers and mothers of all wars. Evil does not relent; it must be defeated. And even when defeated, uprooted, and purified by fire, evil leaves behind a seed that will one day germinate and, in blooming, again be misunderstood."

-- Odd Thomas in Odd Apocalypse by Dean Koontz

Most Europeans see the United States as the land that embraces genetic engineering. So imagine the surprise when a British firm — Oxitec — ran into the buzz saw of public opinion trying to introduce a genetically modified (GM) mosquito in Key West to eradicate the dreaded Dengue virus.

Within a few weeks of a public meeting to discuss the mosquito release, a petition against the initiative had more than 100,000 signatories. [The entire population of Monroe County, which encompasses The Keys, is only about 75,000.] Key West inhabitants have branded Oxitec mosquitoes with names like “Robo-Frankenstein mosquitoes,” “mutant mosquitoes,” and “Super bugs,” using rhetoric lifted from movies like Jurassic Park and The Hunger Games.

Are people overreacting? Maybe. But a closer read of many of the comments posted on the petition website provide a deeper insight into the resistance and some key lessons for future technologies dependent on genetic engineering.

Decades of research on risk perceptions have shown that people differentiate between “voluntary” risks, which we willfully undertake, and “non-voluntary” risks, which are imposed upon us. People will smoke themselves to death while fighting against a nearby factory emitting pollutants.

In this case, Key West inhabitants clearly saw the government and the company imposing their will on the population.

Our modern society has commodified the human body so much that I feel sometimes that I am living in a novel by Kazuo Ishiguro.  It seems that none of us are safe if someone else thinks that they could use our parts better than we can.

The NHS is considering its biggest shakeup of the ethical, legal and professional rules governing transplants, floating ideas to prolong the lives of people who have no chance of surviving in order to harvest their organs, and to make people opt out rather than in to the donor register.

The options are included in a survey of medical, scientific and public opinion to be launched this week to test the boundaries of what might be acceptable, as a precursor to significant reforms.

The survey, on the NHS Blood and Transplant (NHSBT) website from Saturday with a deadline of 21 September, will also suggest:

• Giving priority for transplants to the 19.1 million registered donors in the UK.

• Deploying new technologies to preserve organs beyond the current method of packing them on ice.

• New financial rewards for intensive care units for every organ they provide. Hospitals currently receive about £2,000 per organ to cover their costs, which the NHSBT compares with the €7,000 (£5,500) paid in Croatia.

• Presuming consent unless people have actively opted out.

In 1978, the first child conceived by IVF was born. In the following 33 years, numerous technologies and techniques have been developed to further aid the ability to achieve pregnancies in couples for whom natural conception has failed. However, these techniques have rarely been robustly tested and approved before they are routinely offered to infertile couples. In other cases, a development in our scientific understanding of a technique has failed to be quickly incorporated into clinical changes. This raises the concern that some of the techniques offered to some patients offer little or no benefit, and in the worse cases is not confirmed to be safe. This is a particular concern as many of the techniques discussed here are often reserved for already vulnerable patients, such as those with recurrent IVF failure. [Emphasis added]

Scientists suspect that embryos that have developed in petri dishes are slightly different in some ways from embryos that develop in the womb, but they are still working out the specifics. They have some indications that IVF embryos are more likely to have certain genetic diseases and developmental problems. but they still need more data.... In other words, if you're an IVF child, then you are a walking human experiment. Scientists are waiting to see what will happen to you as you get older, so that they can complete their data collections on the effects of IVF on people.  

Sounds really ethical, doesn't it?

Current techniques do not ‘cure’ infertility, they just overcome it... The most appropriate focus of future research may be to restore fertility.

Years ago I used to juxtapose two quotes that I felt represented the Culture of Life and the Culture of Death on an issue nearly every week.  I think I might bring that back starting with these.  But because my readers are so smart and don't need me to tell them which is which, I will just call them Culture Quotes:

"The connection between marriage and parenthood is not a vestige—it is a thriving expectation that those who get married will at least consider pursuing parenthood. Marriage is a celebration of two people’s union and the possibility of parenthood. And gay marriage entails not just social approval of gay love, but also social approval of the possibility of gay parenthood.... Because of this, many gay married couples that want to become parents will opt to use ART.... Donor-conception, unlike adoption, is a market where new humans are created to fulfill the demands of the adults that want them. “Commercially conceived” persons are deliberately denied a relationship with one or both of our biological parents. The tragic, primal wound ubiquitous in adoption literature is woven into every commercially conceived person’s life story."

--Alana S. Newman, donor-conceived adult and founder of The Anonymous Us Project—an anonymous story collective for people involved with Artificial Reproductive Technologies (ART)

"The criminalisation of sperm and egg donation has absolutely nothing to do with the protection of the embryo and is based on a restrictive model of the family which no longer applies in today's world. [Malta Gay Rights Movement] reiterates that it is not the role of the State to determine who can or cannot become a parent and the introduction of this Act would constitute an unjustified intrusion in the private lives of individuals.  It is truly shameful that LGBT persons will be forced to access reproductive health services in other countries at their own expense while subsidising the health services available to their heterosexual counterparts with their tax contributions, once again reinforcing the notion of second class citizenship."

--  Gabi Calleja of the Malta Gay Rights Movement on Malta's proposed Embryo Protection Bill that would ban the use of donor egg and sperm in IVF

Any stem-cell–based product that contains cells or tissues that "are highly processed, are used for other than their normal function, are combined with non-tissue components, or are used for metabolic purposes" — and that includes most, if not all, of them — would also be subject to the Public Health Safety Act, Section 351, which regulates the licensing of biologic products and requires the submission of an investigational new drug application to the FDA before studies involving humans are initiated.

"Many patients are dying or suffering daily with incurable diseases or problems that require major surgery. These patients should have access to basic adult stem cell therapy now." stated Christopher J. Centeno, M.D, an ASCTA physician member. "ASCTA is establishing guidelines which will allow the safe use of the patient's own adult stem cells under the supervision of doctors." continued Centeno. Another ASCTA physician member, Frank Falco, M.D. stated, "The FDA's position against someone using their own stem cells is taking it too far. We are talking about a person using their own tissue to treat a degenerative disorder or process safely without the use of medications or surgery. Although we agree that oversight and standards are necessary, this should be provided through a physician organization such as ASCTA rather than by a government agency."

We live in the age of Molecular Biology, where diagnostics (including those for Down Syndrome) are becoming much more accurate, sensitive, and inexpensive. It’s a blessed thing to behold.

That may come as a surprise statement to many, but the truth of the matter is that diagnostic testing for Down Syndrome has great potential for good, especially the newer blood tests that can detect Down Syndrome earlier.

First, letting parents know much earlier takes from the more eugenic Ob/Gyn’s the leverage that comes with the more traditional (and later) amniocentesis. Women often receive those tests results within days to a couple of weeks of the legal limit for having an abortion. It doesn’t give the woman time to emotionally digest the diagnosis, leaving her vulnerable to coercive pressure from genetic counselors, doctors and family.

Next, the earlier blood tests allow more time for women to sit with their decision, and to seek out and receive alternative advice without the deadline for abortion looming large on the horizon. Contrary to arguments that say the abortion rate will skyrocket with such testing, as early term abortions are easier to have, one need only consider that research from Harvard University shows that 93% of all Ds babies diagnosed are being aborted; so there’s little margin for any skyrocketing of abortions.

The glass is half-full here.

By itself, the technology is morally neutral. This technology can alert an Obstetrician to the need for more sonograms and the need for bringing onboard a perinatologist. Some Ds babies have anomalies that require immediate surgical intervention at birth. Early diagnostics can help to determine whether the birth should be vaginal or C-section, and whether or not a surgical team needs to be on standby....

Knowing the devastation that often comes with such diagnoses is key to helping parents through that difficult time, and the earlier the diagnosis, the more time we have to help them.

With so much potential good that can come from this technology (and so little room for matters to get worse), it is unwise, even counterproductive to fight against it. Science has actually given us a buffer zone.

We need to exploit it.