The Necessity Of DNA Confidentiality

The DNA of every individual is unique. Even identical twins have variations in their DNA that makes it unique. DNA can not only be used to identify a person but can also reveal medical issues and project potential health problems that may arise in the future (“DNA test company 23andMe now fueling medical research”, 2018). Law enforcement has been using DNA to help identify criminals for many years and has created a very large DNA database (Dedrickson, 2018). The military has a very large DNA database created to help identify soldiers killed in action (“The Collection of DNA from Military Personnel”, n.d.). The National Institutes of Health (NIH) has also created large DNA databases for medical research (Bernstein, 2018). More recently, personal DNA genealogy used for tracing ancestry has become very popular and some of the companies that provide that service are also marketing the information collected or using it for their own research. 23andMe, originally a genealogy service, now provides FDA approved home testing kits that can show predisposition to ten diseases, including Alzheimer’s and Parkinson’s disease. Large pharmaceutical companies have purchased shares of 23andMe in hopes of using the database for research. There is much concern over the privacy of DNA information that is collected, and how that privacy is ensured.

Law enforcement has been using DNA to identify, or eliminate, suspects since 1987 (Dedrickson, 2018). It is routine now to collect a DNA sample from anyone convicted of a felony crime. In some states, it is taken a step farther, and DNA is collected upon arrest for certain crimes. In those state, even if a person is not formally charged, their DNA has been collected and stored. It is well known that DNA is regularly used to help solve crimes today. States maintain their own DNA database. The FBI also maintains a DNA database, the Combined DNA Index System (CODIS). CODIS focuses on 13 markers in the DNA strand that have little information about the individual, especially medical conditions, and claim these markers are good for identifying a person but are good for nothing else (Dedrickson, 2018). Now that DNA is such an integral part of criminal investigations, DNA evidence has been planted at crime scenes to attempt to implicate an innocent party with the crime. DNA evidence collected at a crime scene used to be considered indisputable but now care must be taken to ensure the DNA was not planted to mislead investigators. Although it is safe to assume that people would like for criminal investigations, especially for violent crimes, to be completed as soon as possible, it is unlikely that people want to volunteer to provide their DNA to law enforcement. Law abiding citizens should not be required to provide a DNA sample to law enforcement. It is an invasion of privacy.

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Law enforcement recently used public, voluntary DNA samples to narrow down the search for the “Golden State Killer.” DNA obtained from crime scenes was compared to DNA in the publicly available, free database GEDmatch (Kaiser, 2018). This revealed several probable family members and eventually led to the capture of the suspect. Despite the suspect never having submitted his own DNA, he was located because some of his family members had submitted their DNA (Ford, 2018). This shows how DNA can be used for purposes other than what it was originally intended for. These family members were seeking information about their heritage and instead their information was used to track a killer. No rights were violated because the information was publicly available and voluntarily given. Caution should be taken when providing DNA samples to prevent unwanted use.

Having a large DNA database can be very beneficial to medical research. Studying many DNA samples can provide valuable clues to diseases and other medical conditions (Bernstein, 2018). The military and the NIH both are working toward having a very large database. The military database was originally created only to help in identification of deceased service members but was broadened to allow it to be used for law enforcement also. The NIH database is intended to be used for medical research only and is completely voluntary. Currently, it only includes adults, but adding children is expected in the future. The NIH database is not growing as fast as expected because people have concerns over privacy. The concern over privacy is most likely because laws can change but the data will always remain and can possibly be used against the donor in the future.

One of the benefits of studying DNA is the ability to predict future medical conditions. This information is useful to the patient but must be kept confidential. A possible conflict arises when a genetic condition is identified but the patient does not want to share the information with their children, who may also have the same condition (Elger, 2016). This puts the physician and the patient in an awkward situation. Both know the information should probably be shared, but the patient has a right to confidentiality. Conditions that directly affect children should be made available to them, so that early treatment can begin. Withholding genetic information that can possibly affect the health of another individual should be criminalized. Confidentiality laws as they are written today protect both the doctor and the patient from disclosing information to third parties, except for specific conditions. DNA abnormalities should be added to the list of conditions that must be revealed to other parties that would benefit from that disclosure.

A potential problem with DNA databases is genetic profiling (May, 2018). If a certain group of the population shows genetic deficiencies, they could be ostracized. Population segments or races could show bad tendencies in their DNA and be considered inferior. Although DNA testing would provide the information to attempt to treat these problems, genetic racism could exist. This would be particularly relevant to job discrimination and employment discrimination. Insurers would raise rates or refuse to insure those with a predisposition to certain medical conditions and employers might overlook applicants with a poor genetic profile. In the future, DNA may become part of an insurance application.

Protecting personal DNA information is critical. It may be fun and interesting to learn about your heritage, but that information can be stored indefinitely and could be used for other purposes. There is a “Confidentiality Contract” to limit what genetic information can be used for by some agencies that collect and store DNA information (Bernstein, 2018). It prohibits your information from being used by law enforcement. This encourages people to allow their DNA to be used for research without the fear of it being used against them. Even without use by law enforcement, people still have sensitive health information that they may want to keep private, and there is always the possibility of someone hacking into the database and revealing information.

DNA databases should exist. Having access to millions of samples of DNA is extremely beneficial in diagnosing and treating diseases and learning more about everything that DNA can teach us. The conflict is how that DNA is collected, how it is stored, and how it is used. Except for convicted criminals, DNA samples should be given voluntarily. It is a violation of privacy to require law-abiding citizens to provide mandatory DNA samples. Storage of DNA information needs to be extremely secure. A double-blind storage system has been suggested, where the DNA information is stored in one location and the identities of the donors are stored in a separate location, both of which are highly secure. It has also been suggested that samples be destroyed immediately after they are processed. DNA samples should not be given without some form of contract, stating exactly what the DNA will be used for, how it will be stored, how long it will be stored, and if can be used for anything other than what is expressly stated in the contract. A common fear is that after DNA databases are extremely large, that laws will change and make the DNA available for uses other than what the donor originally intended.