Genetic Privacy

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DNA extracted through cheek cells.

A study at the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts, led by Yaniv Erlich1, shows that an individual could be identified using his/her sequenced genome. Erlich and his team created an algorithm that enables them to identify an individual. After receiving a genome project participant’s genetic sequence, who also submitted their family pedigree, Erlich and his team identify both project participants and family members. Although many see this as a grave privacy invasion, utilizing individual’s genetics information has resulted in many positive medical discoveries. As an uncommon practice, an average citizen, does not have the means to use genetic information to discern an individual’s identity. Therefore, making an individual’s genetic information publically accessible may be a privacy violation, the low likelihood that this would bring much harm causes the benefits to outweigh the negative aspects.

According to Eryn Brown’s Los Angelos Times article, keeping genetic data private concerns many. Companies may use genetic information to “drop benefits or discriminate against workers.” This would evidently hurt certain individuals who are looking to be employed. For example: discrimination against those who have a history of any type of life-threatening disorders or diseases because of the chance that they would not be a reliable and stable worker for a company. Simply having genes for a certain type of ethnic group could cause discrimination as well. People should evaluate candidates based on their abilities, not their genetic history. It shouldn’t be a factor in the employment process because our genes can’t be altered in any way; humans can’t choose the genes with which they are born. Besides, having unfavorable genetic differences doesn’t actually imply that a person will develop whatever disease his/her genes express; it just means that the risk is higher. To alleviate this issue, the government passed a Genetic Information Nondiscrimination Act back in 2008, which “protects Americans from being treated unfairly because of differences in their DNA that may affect their health. [This] law prevents discrimination from health insurers and employers.”

Erlich Lab
Whitehead Institute for Biomedical Research in Cambridge, Massachusetts.

Yaniv Erlich succeeded in discerning the several individuals’ identities using their sequenced genomes in a lab, but an average person would not be able to do this. This process requires in-depth knowledge of math and science. According to Nature’s article called “Genetic Privacy, “Erlich’s team wrote an algorithm that infers an individual’s pattern (a haplotype) of genetic markers called short tandem repeats from the nucleotide sequence of his Y chromosome. The team then searched genealogical databases to find the names of men with corresponding Y-chromosome haplotypes. The team confirmed the correct names by cross-referencing the possible last names with public records of people of similar ages and locations.” This does not sound like something any ordinary person would be able to do. According to Dr. Jeffrey R. Botkin, an associate vice president for research integrity at the University of Utah, it is hard to imagine what would motivate anyone to undertake this sort of privacy attack in the real world.” There has not yet been a case of anyone purposely trying to identify someone else using their genetic information. Therefore, the public should not be overly concerned about everyone having access to databases filled with genetic information; the chance that someone would use it or be able to use it to commit a crime or hurt someone else is slim.

In addition, allowing the public to have access to individuals’ genetic information could actually benefit society. This notion can bring us back to 1987, the first time a suspected rapist in Florida was convicted using DNA testing. This method has been used since then to solve cases and even exonerate those who were falsely convicted in the past. It is never fair for one to be punished for a crime he/she did not commit, and we can effectively confirm uncertainty in these cases using genetic data. This objective way of solving a case solely relies on hard fact, not on opinion or emotion. Even the high court declared DNA a “vast genetic treasure map.” DNA samples can code for far more than other identification methods like fingerprinting. It can code for “family ties, some health risks and, according to some, can predict a propensity for violence.” This information can be extremely valuable when used in court cases. The National District Attorneys Association believes that DNA sampling “serves an important public and governmental interest.” Although complete access to people’s genetic information can be a breach of their fourth amendment rights, using it in a way that would actually benefit them far overweighs the negative aspects.

Public access to genetic information also benefits people genuinely interested in their family history and ancestry in regard to diseases. One may want to know his/her chances of being diagnosed with some type of illness based on past cases within the family. Genetic information “complete[s] family trees.” This could potentially save lives and/or merely educate a person interested in his/her background. Research projects like the 1000 Genomes Project, have “collect[ed] genetic information from people around the world and post[ed] it online so researchers can use it freely, includ[ing] the ages and place of residence of participants.” DNA sequencing has made it possible to discover which genes code for which diseases. One out of twenty babies in hospitals’ newborn intensive care units live with a disease. There are many who have died without doctor’s being able to figure out the cause, in the past. Now with new technology and the possibility of sequencing genomes, we can avoid that unfortunate issue. This method of diagnosis costs a lot, but with the chance of being able to save lives, we should overlook that aspect. According to Dr. Kingsmore of Children’s Mercy’s Center for Pediatric Genomic Medicine, “[p]roviding a definitive diagnosis somehow brings closure...[i]t is something they can name.” The New York Times article suggests that “just knowing the answer can be a comfort,” Dr. Kingsmore found that “families greatly valued having a diagnosis.”

Understandably so, some people completely oppose the idea of publicly accessible genomes: there are privacy concerns and other issues that can come along with allowing everyone to have access to genetic information. However, there are a number of benefits that shouldn’t be overlooked, especially when one’s life is at risk. DNA sequencing has helped, is helping, and (I believe) will continue to help society. This major breakthrough has changed lives and promises to do even more in the future.

1. "Genetic Privacy." Nature 493.7433 (2013): n. pag. Nature. Nature Publishing Group, 17 Jan. 2013. Web. 4 Feb. 2013. <http://www.nature.com/news/genetic-privacy-1.12238>