Column: With genetic power comes political responsibility

 This Aug. 8, 2008 file photo, shows embryos being placed onto a CryoLeaf ready for instant freezing. On Monday, Feb. 1, 2016, the Human Fertilisation and Embryology Authority, Britain’s fertility regulator, approved a scientist’s application to edit the human genetic code using a new technique that some fear crosses too many ethical boundaries. (AP)

Early in 2016, we are already seeing incredible advances in medical research; however, these innovations require the redefinition of a number of politics to protect the medical privacies of individuals and prevent discrimination in new territory.

On Feb. 1, the United Kingdom’s Human Fertilisation and Embryology Authority (HFEA) granted license to researchers at the Francis Crick Institute in London to genetically modify embryos, according to BBC Health.  The same day, an old genetics discrimination case from Palo Alto, California has sparked the interest of the federal government after a district court initially dismissed the case in 2013, according to Wired. Both pieces of news underline the onslaught of controversial issues regarding medicine and genetics involvement in social issues.

The license granted to the researchers allows for further study into the development of an embryo in its earliest moments. This will allow for specific manipulation of DNA in order to find a deeper understanding of not only the development of a normal embryo, but one that carries disorders as well. With the current technology available, the possibility of correcting such disorders is imminent. Last year, scientists in China announced their success in correcting a gene that causes a blood disorder. However, the guidelines China follows in terms of research involving embryos are different than those followed by other countries.

Robin Lovell-Badge, a scientific advisor to HFEA, told BBC that this would be the first time this process “has gone through a properly regulatory system and been approved.”

The problem is that this comes with the opportunity to create genetically modified (GM), or informally referred to as “designer,” babies. Despite the HFEA’s strict policies against implanting any embryo used or created in research into a woman and sustaining the embryo beyond 14 days after fertilization, many scientific advisors in the government have already stated support in creating genetically modified embryos for implantation.

Meanwhile in Palo Alto, a child known to have genetic markers for cystic fibrosis, not showing any signs of developing the disease, was forced to leave his school, according to Wired. This was sustained because there were two children already attending the school with cystic fibrosis and they couldn’t be near each other due to the increased vulnerability to contagious infections. The school has yet to comment on their stringent maximum of two students with cystic fibrosis, as they are vehemently against adding a third. Unfortunately, the district court dismissed their case initially, until the federal government took interest in it after both Departments of Justice and Education wrote briefs in support of Colman Chadam’s case.

Now this case ostensibly falls under genetic discrimination, until one learns that the Genetic Information Nondiscrimination Act of 2008 (GINA) bars genetic discrimination in only two cases: employment and health insurance. So instead, this case falls under the Americans with Disabilities Act, where it is going to test unexplored waters. Due to the weight of a precedent to be set with this case, judicial officials will, more likely than not, go about adjudicating this case prudently. This case may be the first to set the legal standard for discriminatory cases involving children and their rights to housing, education and basic rights.

Research can lead to many discoveries at an astonishing pace, one that may be too fast to allow the policies and the judicial system to keep up in order to protect the rights of citizens. Who is to determine when to draw the line when it comes to embryonic genetic manipulation? Who is to prevent parents from creating designer babies with their preference of gender, skin color, eye color, etc.? Who is to protect those who cannot afford such measures and have children who suddenly no longer fit the socially constructed norm? Additionally, DNA tests only show an individual’s predisposition to having a certain physical trait. Genotypes, genetic information based on alleles, are not always expressed in the phenotype, an individual’s physical characteristics. So despite a parent’s desire to have a child without certain predispositions to certain traits, whether it is disease or hair color, markers don’t necessarily guarantee an outcome.

If the genetic modification of embryos is successful, especially in the endeavors of reprogramming the human genome to correct any abnormalities in the DNA that would give an individual a predisposition to a disease, then we will see genetic discrimination used to exacerbate social issues such as classism, sexism and racism. There is a severe deficiency of policies regarding genetic discrimination and privacy regarding such information. With the modern medical resources available, we are already putting individuals in a dangerous position, one where they need to fend for themselves without a protection from the judicial system.


Jesseba Fernando is a staff columnist for The Daily Campus opinion section. She can be reached via email at jesseba.fernando@uconn.edu.