Wednesday, March 28, 2007

Cultural 'Assimilation' Taken to the Next Level


If parents have access to manipulate the genetic configuration of their offspring, should a qualified medical specialist assent to their wishes?

Speaking of genetic manipulation, this fascinating read in the New York Times online tackles some ethical questions that are worth mulling over. The contemplative piece examines the premeditated choice of an embryo's genetic make-up by prospective parents.

It reveals the increasing incidences in the use of preimplantation genetic diagnosis or P.G.D. amongst couples who want to “to select an embryo for the presence of a disability."

P.G.D., as the name suggests, involves the in vitro fertilisation of a person's oocytes and keeping the embryos in culture while waiting for the outcome of the diagnosis. The Wikipedia informs:

It is also necessary to perform a biopsy on these embryos in order to obtain material on which to perform the diagnosis. The diagnosis itself can be carried out using several techniques, depending on the nature of the studied condition....These techniques need to be adapted to be performed on blastomeres and need to be thoroughly tested on single-cell models prior to clinical use.

As mentioned in the article, the two prevailing cases of 'disabilities' - purposefully altered at the embryonic level - are deafness and dwarfism. In the latter especially, more and more parents are opting for this method to select a gene that enables them to conceive a 'little one'. Due to the possible fatalities attached to carrying a baby to term for a dwarf couple, the heavy reliance on P.G.D to correct the 'double dominant mutation' problem provides these parents an easy route in choosing their preferred genetic material:
Preimplantation genetic diagnosis can identify embryos with double dominant mutations, so they can be discarded before implantation, while preserving embryos destined for either dwarfism or average height. In dwarves, then, P.G.D. could help avoid many doomed pregnancies if double dominants were never implanted. But then a choice would have to be made, since the genes are known. And many dwarves might select embryos for dwarves — although others might choose those for average-size children.

Enjoying the benefits of a 'shared, rich culture' has been cited as the pivotal reason that led parents to turn to science in perpetuating an almost esoteric level of closeness - an empathetic bond, a cultural heritage - with their next of kin. Another basis for consenting to the presence of 'defective' genes concerns the socially disruptive life to be faced by an 'average-size' child born to dwarf parents. The fear of being 'teased excessively', thus subjected to playground taunts and other negative scenarios later in life, has driven these parents - irrational and presumptuous in my opinion - to play God and fix the fate of their own progeny.

Another form of P.G.D. exploitation, with a high number of cases reported in the US, centers on 'family balancing' - selecting the gender of an embryo in a concerted effort to balance out the gender of children currently residing in one family. While this might be the excuse 'formally' stated, other occurences point to simply preferring one gender over another. In the patriarchal society of India for instance, sex selection of male embryo - although illegal in practice - has gained momentum in recent years.

From the Islamic point of view, I managed to ferret this fatwa out from the internet, which succinctly sum up Islam's stance for allowing in vitro fertilisation:

  1. Fertilizing a woman’s ovum with her husband’s sperm outside the body and then transferring the fertilized ovum into her uterus.

  2. Inserting the man’s sperm into his wife’s uterus so that the fertilization be made inside her body.

Notwithstanding these explanations, the verdict is still out on the permissibility of P.G.D. in Islam. A research paper on prenatal medical practices in Saudi Arabia explores P.G.D. as a valuable alternative to P.N.D. (prenatal diagnosis) in remedying the presence of genetic disorders. It concluded that most couples interviewed believe that P.G.D. technology is worth pursuing. Also, the discourse implies that better understanding about Islamic law among the younger and more educated segment of the sampling size compels them to have fewer concerns in trying out P.G.D.:
It has been assumed by policy makers that preimplantation diagnosis will be considered preferable to PND by Muslim parents, because it is done when embryos are only at the eight-cell stage and ‘breathing the soul’ has not occurred at this time.

Based on this premise alone, it can be generally inferred that Islam allows the P.G.D. technique. However, the current dearth of Islamic scholarly opinions on the many underlying agendas for P.G.D. suggests that we should tread on this issue carefully and by case-to-case basis.

On a personal level, I find that P.G.D. is susceptible to genetic engineering where debased specialists are more than willing to do the client's bidding in exchange for a large sum of money. The evolution of so-called designer babies complete with a host of desirable physical, cognitive and behavioural traits might be just around the corner. Inasmuch as I agree that P.G.D. is acceptable in Islam in certain circumstances, a moral dilemma still persists in grasping the wide ramifications of such a powerful scientific tool.

My painful experience with the possibility of a down syndrome baby also piques my interest in the developments of reproductive assistive technology. The specific area of interest relates to the aneuploidy screening utilised during P.G.D. available for "couples undergoing IVF with an advanced maternal age and for patients with repetitive IVF failure." Since the chances are high for chromosal disorders (aneuploidy) in women over 35 years old, this screening helps - emotionally and physically - by circumventing the likelihood of an aneuploidy.

In our case, the doctor might, as bluntly put by my twin sister, be using the blood test result as a means to make more money from us. That is, through the expensive and unclaimable amniocentesis procedure. But as a first-time mother, we'd rather err on the side of caution. In the end, we were satisfied that we'd exhausted all efforts possible and readily left it to God's will.

As for preserving the so-called culturally-enriched lineage, it is undoubtedly a blessing to have a baby that meets your own set of expectations - whatever they may be. Yet, the undue focus on the genetic component of baby-making will eventually create an environment where people either strive for 'perfect' offsprings or recruit their child into various 'disability' clubs. Those who cannot afford the expensive procedure will feel ostracized and subsequently eliminated from the 'superhuman' rat race, not unlike the futuristic, Utopian world depicted in Gattaca. For this purpose and before it is too late, a governing body should be formed to guide, intervene and weigh the necessity of genetic engineering purely for non-medical reasons.

Dr Sanghavi ended his essay in the New York Times by rallying the readers' support to advocate a society in which you won't, for example, be judged by your height or the language you speak. While I salute his commendable aspiration, I tend to think he has somewhat missed the point. Isn't it supposed to be the other way around - societies are an extension of family relations? After all, a person's bearing is a reflection of his or her upbringing. Last time I check, education begins at home.

Comics taken from Cartoonstock.com and Cartoonbank.com respectively

4 comments:

NorAiniJ said...

Nice story. The designer baby predicament was deliberated at length by the med professionals in M'sia a few months back. And the verdict if I am not wrong is that it should not be put to practice at least in M'sia, although there has been one designer baby boy born/designed in M'sia already.

Theta said...

Hi NJ,
Thank you for shedding some light on this matter where Malaysia is concerned.
There was one designer baby? I have to dig up the news on this...any newslink you can recommend? Thanks again...

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