Uncovering anonymous identities really is as difficult as it sounds

Veronica Krieg

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Imagine discovering a person’s entire genetic identity by typing a few digits into your calculator, solving some equations, and creating a complicated algorithm that gets the job done every single time. A scientific breakthrough this large could create numerous medical advantages as well as generating the accompanying disadvantages. Using DNA to discover a persons identity then becomes an extreme ethical concern, especially when regarding the research studies’ subjects. With most research studies using anonymous subjects, uncovering a subjects identity can breach the confidentiality and trust that the subjects hold with the scientists. Although new studies have led to the uncovering of previously anonymous research participants’ identities, this discovery should not cause major concern to the public and scientific community due to the fact that only a small percentage of the population is capable of this discovery, those partaking in research studies are aware of the possible risks when they choose to participate, and there are United States genetic privacy laws protecting and maintaining participants confidentiality.


As you can imagine, a task such as sequencing DNA is not a simple one. The Personal Genome project, an ongoing research study that enables scientists to use DNA and create a road map for an individual's genetic sequence, was started a number of years ago in hopes of making breakthrough medical discoveries. Since the start of the research project, many different teams took it upon themselves to experiment with the project as well. As stated in the Nature article on Genetic Privacy, one team of scientists at the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts has used genetic processing to come to the conclusion that it is possible to discover an anonymous person’s identity through genome sequencing, and this discovery causes the scientists to fear that anonymous research participants could suffer a loss of genetic privacy. (http://www.nature.com/news/genetic-privacy-1.12238.) Genetic processing and sequencing is a way of looking at one’s DNA and being able to determine his or her biological traits. Complete genetic processing gives scientists access to information such as someone’s susceptibility to get certain diseases, traits inherited from family members, and all internal information that adds up to make someone unique. The discovery of this information is a violation of genetic privacy because anyone’s genes can be read and manipulated to reveal information that is extremely personal. While the team discovered the identities of some research subjects, it is also vital to note that the team is composed of the most qualified scientists in the country and in the world. “Whitehead Institute is a world-renowned non-profit research institution dedicated to improving human health through basic biomedical research… Whitehead scientists run pioneering programs in cancer research, immunology, developmental biology, stem cell research, regenerative medicine, genetics, and genomics” (http://wi.mit.edu/about.) The Whitehead Institute is an incredible scientific research facility that has made numerous breakthroughs and discoveries that continue to improve the health and well-being of people all over the world. There is a prestigious acclaim associated with the Whitehead Institute, and the common public does not have the ability or resources to make discoveries of this caliber; namely unraveling someones genetic identity. The ethical concern is that with the discovery of individuals’ identities, people with access to public records will be able to use their findings with malicious intent. Being that genetic sequencing is not yet widely understood, the ethical concern is nearly eliminated due to the fact that only highly esteemed scientists are capable of making such a discovery.

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Along with the low probability of an unaccredited individual being capable of processing DNA, there is strong indication that research participants’ confidentiality is protected through consent agreements that are provided to all participants. Upon agreeing to participate in a research assignment, whether it is a simple research survey or a more intensive study, there are terms and conditions that must be read and understood by all participants. The main point of research studies is to gain important information that can be helpful to the general public and the scientific community; therefore, the findings of the research projects are usually published and able to be viewed by the public. The consent forms provided for research studies are required to outline the risks to all participants, and since all information is provided, it becomes a personal decision to outweigh the risks and benefits. “The HapMap informed-consent protocol does not unambiguously guarantee anonymity or confidentiality of participants' genetic information. On the contrary, it even mentions the risk of tracing identity through publicly available HapMap data” (www.nature.com/nrg/journal/v9/n5/full/nrg2360.html.) Informed consent procedures are in place when genetic studies are completed, and these consent procedures explain to all participants the fact that there is a chance that individuals’ identities may be discovered and that complete confidentiality is not disclosed. Risk factors being identified and readily available to all research participants aid in easing the focal issue regarding the high risk of unfair exposure.

In addition to participants being fully informed before entry into a research study, genetic privacy laws are in place across the country that ensure the confidentiality of all research participants. According to the National Conference of State Legislatures, a majority of the states go through great measures in order to protect their citizens. “The majority of state legislatures have taken steps to safeguard genetic information beyond the protections provided for other types of health information… Twenty-seven states require consent to disclose genetic information” (http://www.ncsl.org/issues-research/health/genetic-privacy-laws.aspx.) Abiding by all laws that are set in place is necessary for the operation of research facilities and the success of their endeavors; therefore, privacy laws will not be violated by any research facility, and according to the laws, consent is required to disclose genetic information, information about an individual’s DNA and biological traits, and said consent is given when an informed subject chooses to participate in a research project.

With any discovery there are ultimately risks. The important aspect to consider is whether the benefits outweigh the risks. If putting research subjects in confidential danger is a strong risk, new research concepts would need to be developed; however, this is not the case. Great measures are taken to protect individuals’ identities and keep all wanted information private. Few discoveries have been made that led to the identification of anonymous subjects, and these few discoveries do not represent a demographic that can apply to the entire population. Laws set in place by the state are created with the sole purpose of protecting individuals’ identities, and a participant’s consent is required in order to participate in any type of research study. Ethics and science often have concerning overlapping factors, but enough protection is provided that there is no direct concern associated with the discovery of anonymous research participants’ identities.



Works Cited
Congressional Research Service, . "Genetic Privacy Laws." National Conference of State Legistures (2008): n.pag. NCSL, StateNet. Web. 16 Feb 2013. <http://www.ncsl.org/issues-research/health/genetic-privacy-laws.aspx>


"Genetic Privacy." Nature International Journal of Weekly Science. 493.7433 (2013). Web. 7 Feb. 2013. <http://www.nature.com/news/genetic-privacy-1.12238>


Lunshof, Jeantine, Ruth Chadwick, Daniel Vorhaus, and George Church. "From Genetic Privacy to Open Consent." Nature Reviews. (2008): n. page. Web. 7 Feb. 2013. <www.nature.com/nrg/journal/v9/n5/full/nrg2360.html>


Reuters, Thomson. "About Us." Whitehead Institute of Biomedical Reasearch. (2009): n. page. Web. 19 Feb. 2013. <http://wi.mit.edu/about>