I am going to reverse course a little a return to the subject of a previous post about technology and its implication and effects on us a humans today. There is a method to my madness and hopefully by the end of the month you will begin to see why I post the seemingly unrelated posts the way I have been doing. I am trying to paint a certain picture that hopefully will become evident soon….just be a little more patient with me.
Humanity is a creature unique amongst all the living beings existing upon this planet because unlike all other organisms it does not seek to live in harmony with its environment and instead seeks to mold it to its own various needs with a complete disregard as to the effects upon the ecosystem to which it is still a part of. Our very intelligence, our infernal curiosity and our never-ending quest to quantify and qualify the world around us has led us to a point where humanity is now able to ignore many of Nature’s dictates and in fact, may now bypass the consequences of natural selection by using our ability to manipulate the genetic material which is the foundation of our heritage as a species and making such decisions as if we ourselves were Gods.
Humanity stands at the dawn of a genetic age in which unprecedented discoveries and achievements in the field of genetics have allowed us a window into a world previously denied us. The Human Genome Project, which was the largest biological research enterprise in history, has mapped our entire genetic structure. New scientific claims of genes associated with diseases, conditions, personality traits and behaviors are reported regularly by the media and scientists have actually identified and claimed the genes for cystic fibrosis, Huntington’s disease, Fragile X syndrome, breast cancer, Alzheimer’s disease, colon cancer, bi-polar illness, obesity, homosexuality, alcoholism, novelty seeking, shyness, bed-wetting and the list continues to grow longer every week.
James Watson, the co-discoverer of the double helix structure of DNA and the founding father of the Human Genome Project declared that “we used to think our fate was in the stars. Now we know a large part of it is in our genes.” While the promise of improving the treatment of disease is carried by the influence of genetics on medicine, there are many potential obstacles and repercussions that may hamper this vision.
In particular, a long shadow will be forever cast upon the field by the specter of our historical past attempts at eugenics. The implications of the social impact of reproductive genetics are many, but a few of them stand out as more potentially problematic than others. The privacy of genetic information, the potential of genetic stigmatization, the role of genetic screening and intervention in reproduction, enhancements and the specter of human cloning and finally the ever present peril of new forms of eugenics all will have a great effect upon the social impact of reproductive genetics, effects which must examined carefully in order for humanity to be adequately prepared for the next phase in our scientific development.
As the genetic aspect of modern medicine progresses, the problems with regard to maintaining the privacy of an individual’s genetic information increasingly becomes a concern. Genetic testing in itself is usually done for a number of reasons such as to confirm a specific diagnosis in a symptomatic individual, which is also called diagnostic testing, it is done to ascertain the risk of having a particular condition in an asymptomatic individual, and also called predictive or susceptibility testing, to ascertain the risk of transmitting a condition, also called carrier testing, to check to see if a fetus has a genetic disorder, also called prenatal diagnosis, for forensic testing, for paternity or relationship testing and finally for research purposes.
But what does this mean with respect to genetic privacy? Well in many cases the conditions being testing for carry certain social stigmas, i.e., the persons carrying this gene or suffering from these conditions are treated differently from the rest of the members of society and in many instances so do the insurance companies which provide the money to treat the condition. As long as an individual’s condition does not jeopardize the health of society as a whole then that information must remain private. But in an age of where all medical records have been converted to electronic medical records (EMR) who actually has access to the results of genetic testing which are in a patient’s EMR? The concern that the unethical use of test results against vulnerable individuals for the benefit of others or even such other unethical motivations such as eugenics (we will address this subject later on this paper) becomes a very real concern. To minimize this concern there must be some sort of national if not international body to shoulder the onus of maintaining high standards of genetic testing oversight. Even then, cross-cultural difficulties and barriers will no doubt affect just what is considered a violation of privacy and what is considered to be acceptable level of transparency when it comes to genetic test results.
With genetic testing rapidly becoming the norm, the problem of genetic stigmatization increasingly becomes an unfortunate reality. This is the discrimination directed against certain individuals based solely upon an apparent or perceived genetic variation from the norm. For example, the gene for sickle cell anemia can be easily tested these days using the hemoglobin electrophoresis, which I myself have undergone. It is rapidly becoming a common occurrence among African-Americans and Africans today to ask their partners to be tested for this trait before the decision to make the commitment to having children is made because of the prevalence of sickle cell anemia in our race. Already a lower value is being attached to any potential children who are homozygous for the sickle cell anemia gene, despite the fact that most individuals living with the condition today can still live long and productive lives because of the advances in medical treatment.
And Genetic stigmatization will most certainly result in a denial of services or entitlements as greedy insurance companies, as we have seen in the past, try to deny payments for certain pre-existing conditions or to at least increase the insurance premiums of those individuals to prohibitive levels. A subtler form of eugenics could arise from this as certain genes could come to be associated with a certain race or ethnicity and this could lead to genetic discrimination with regards to individual choice and disincentives by insurance coverage.
The role of genetic screening and intervention in reproduction is a controversial topic because of the many sociological concerns which arise from any manipulation of our genetics with respect to reproduction. The world has still not healed and perhaps will never heal from the dark specter of Nazi eugenics which the Holocaust cast over our world. Who decides which traits are valuable are which are not? This path leads to a point where certain traits and the disabilities which arise from these genes are becoming devalued; will this mean that a whole segment of society will become marginalized as we become ever more efficient at weeding them out before they are even born?
The Human Genome Project has discovered the existence of many genes which have been linked to certain behavioral traits such as the trait for homosexuality. In the first place, why were we searching for a gene for homosexuality and if it does exist then it follows that there must be one for heterosexuality too? It seems to me that already the specter of eugenics has begun to loom over genetics once again, because there are many in positions of power whose political and sociological agenda includes the suppression of “unnatural acts” such as homosexuality, despite the fact that if there is a gene coded for this behavior then it is actually very much a part of nature.
The perspectives of disability activists and what public health officials maintain are necessary goals in public health will continue to clash because the argument of the activists that the genetic intervention of disabilities negates the value of disabled people has much truth to it. While medical advocates counter with the argument that they are preventing disabilities and not people, things like genetic intervention through abortion or gene therapy is leading to eugenics if not by specific intent then at least by outcome. With technology rapidly moving in previously unimagined territories it is not so outlandish to imagine a world in which our ID cards also contain a genome map of each individual, supposedly placed there for rapid medical access but in fact it will divulge our entire genetic endowment. Already there is a genetic DNA database of all convicted felons in the US along with all military and federal personnel. How long before this trend becomes mandatory?
When discussing genetics and reproduction, there is a subject within this topic that has gripped the imagination of the population since the idea of genetic manipulation was first introduced, and that is of course genetic enhancement and human cloning. Despite widespread agreement that it would be ethical to use somatic cell gene therapy to correct serious diseases, there is still uneasiness on the part of the public about this procedure. The basis for this concern lies less with the procedure’s clinical risks than with fear that genetic engineering could lead to changes in human nature. Legitimate concerns about the potential for misuse of gene transfer technology justify drawing a moral line that includes corrective germline therapy but excludes enhancement interventions in both somatic and some germline contexts. Germ-line gene therapy is defined as the deliberate genetic modification of germ cells (sperm or oocytes), their precursors, or the cells of early embryos where the germ-line1 has yet to be segregated, while in somatic cell therapy the genes which are replaced cannot be passed on to the next generation unlike those used in germ line therapy which negates the possibility of changing or enhancing an individual’s actual genome.
Hundreds of movies and books have been made and written about genetically enhanced super-beings, soldiers or a powerful elite but is it now so farfetched in this world? In an era where the new technologies that civilians utilize are driven by the progress first made by the military-industrial complex, how naïve is it to believe that the cloning technology used to create the first cloned mammal, the sheep named Dolly almost two decades ago in 1997 has not been improved upon and how much more naïve is it to believe that our military would not have a long ago progressed from animal to human testing if only to keep up with less “morally scrupulous” countries who would have much to gain in having an army of enhanced and cloned soldiers. It is no longer science fiction and it is frightening. We already regularly genetically enhance humans using somatic gene therapies to treat illness and we have the technology to produce germline enhancements. Is it so far-fetched to believe that scientists have not already taken the next logical step?
Finally and of course most ominously is the danger of the creation of a new form of eugenics that is acceptable to mainstream society because it has been disguised as a benefit for society as a whole. Wiping out the various genes which cause genetic illnesses from the gene pool may seem like an admirable goal, but how does one judge the value of an individual? Just because an individual is symptomatic of a disease or simply carries the gene does this mean that they cannot add to the fabric of our existence? Most of the genetic research done in the world today is controlled by governmental bodies or private organizations both of which lack a transparency that is necessary for proper regulation of this technology and the ability to maintain a strict watch over any of the many sociological problems which will inevitably arise. This means that by limiting or stimulating human reproduction, as was done at the beginning of the last century, or by preventing genetic diseases and improving physical and mental characteristics as is done regularly nowadays, distinct and ominous changes are being made upon our species. In the implantation of such actions, contradictions are produced, such as the discrimination and elimination of many people in exchange for the view of one ideal human, eminently social factors are being turned into biological ones. The defense of a supposed scientific neutrality and the indiscriminate use of the reproductive choice right to push forward a sinister agenda, all will inevitably contribute to the acceptance and indeed implementation of a social eugenics which echoes the same mistakes made over and over again in history, from the Spartans to the Nazis.
And this is not unique to other cultures. In the Buck vs. Bell decision of May 2, 1927, the United States Supreme Court upheld a Virginia statute that provided for the eugenic sterilization of people considered genetically unfit. The Court’s decision, delivered by Justice Oliver Wendell Holmes, Jr., included the infamous phrase “Three generations of imbeciles are enough.” Upholding Virginia’s sterilization statute provided the green light for similar laws in 30 states, under which an estimated 65,000 Americans were sterilized without their own consent or that of a family member. And to this day the Supreme Court has still not expressly overruled this decision which means that technically speaking it is still perfectly legal. Couple this fact with the possibilities that genetic research has now opened and our biological future does look rather ominous.
It behooves those working within the field of reproductive genetics to develop a nuanced understanding of the benefits and risks of reproductive genetics to humanity on all levels. They will have the opportunity over the next several years to advocate for policies that promote reproductive well-being for all individuals as the public becomes more aware of the potentials, both good and bad of this field of medicine. Policies that promote reproductive well-being for all individuals while ensuring that men, women and families benefit from advances in reproductive technologies and genetic research while at the same time protecting those same men, women and families from the dangers inherent in such research. And while the reproductive health care community faces this changing world of reproductive science, they can do much to help patients understand their options and make the best decisions for the best possible care while at the same time carefully monitoring not only the progress of this field of research but the bioethical and sociological implications that come hand in hand with it
This is the direction we seem to be moving in. Stayed for more on the subject……