Abstract
This paper examines the negative ethical consequences that newly developed DNA tests have on individuals and their privacy within society. Although DNA testing has beneficial uses, there are a wide variety of negative effects in using, unregulated at home testing kits known as LTDS. Many companies do not have clear privacy policies for customer’s privacy when using their services. This puts their information at risk to be sold to third parties or stolen. Use of these kits can also eliminate valued doctor patient confidentiality as customers do not know the examiners that analyze their DNA. These private companies also do not have high security standards that would protect from data breaches that could release their information to hackers. Furthermore, the FDA has not yet produced regulations and guidance to LTD producing companies.
Introduction
Genetic testing, also called DNA testing or profiling of the human genome, has become a common form of discovery for many identifiable factors. Popular uses for DNA profiling include discovering hereditary diseases possible in a human lifetime, tracing human ancestry, and providing information that can be used as evidence in cases of criminal conviction. DNA testing can be used to run these particular tests because each human individual has a unique genome pattern that is formed from the sharing of DNA from both of an individual's parents. The ethical problem with these growing and newly developed tests rests in the agencies, doctors, and examiners providing such tests. There are few if any regulations on companies that provide testing and profiling for purposes other than medical testing. Lack of regulations are allowing for customer’s information to be bought and sold to third party companies such as employers and insurance agencies. This sharing of personal information is a concern to privacy rights exhibited by most people globally. Privacy is the protection one has of his or her own personal information. An example of privacy is medical details that are kept between and individual and their respective doctors. However, with these new-fashioned companies, individuals are no longer tested or examined in the same way. Instead of scheduling doctor visits where patients produce samples like saliva swabs, individual LTD kits can be purchased online by customers to use at home. There they produce samples at home and send DNA in for testing. There is no guarantee that LTD companies are not sharing this information with other people or organizations. Therefore, the reason that DNA testing is unethical is because individual’s private medical information may no longer be private.
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Discussion
DNA Confidentiality
Most individuals associate their doctor appointments with the ability to ask questions and receive personal feedback without the need for embarrassment. This is due to confidentiality forms and waivers that are signed in order to ensure that doctors will not share any personal information of an individual with a third-parties. However, this is a false reality. In a study done by Dorothy Wertz and John Fletcher contradictory conclusions were drawn about the kind of information that doctors would disclose to certain individuals. The study found that there were four particular reasons for which doctors would disclose a patient's individual medical records without their consent or knowledge. These reasons are as follows in D. C. Wertz and J.C. Fletcher’s survey 1989: (1) 54 percent said they would disclose to a relative the risk of Huntington disease; (2) 53 percent said they would disclose the risk of hemophilia A; (3) 24 percent said they would disclose genetic information to a patient's employer; and (4) 12 percent said they would disclose such information to the patient's insurer. Primary care physicians may even be more likely to disclose such information. (p.35-44)
Huntington disease deteriorates the brain progressively causing uncontrollable movements, emotional complications, and loss of cognition. This condition usually develops in an individual’s thirties or forties. Hemophilia A is a blood disease in which an individual’s blood does not clot in affective way. This can lead to prolonged bleeding and sometimes life-threatening losses of blood. Therefore, many people may be able to understand the doctor’s reasoning for the first two scenarios in which the doctor would disclose medical information. Both diseases would have profound impacts on an individual’s health and well-being and perhaps the well-being of others. However, the fact that 24 percent of doctors said that they would disclose information to an individual's employers, and 12 percent would discuss the information with the patient’s insurer shows the corruption within individuals with whom we place trust. These third-party companies have no right to obtain customer or worker medical information unless agreements have been formed and individuals affected are notified. If an individual's medical doctors cannot be trusted to ensure confidentiality, how could information be kept by DNA profiling companies without any guidance of confidentiality restrictions at all?
National DNA Database
Government officials first developed the national criminal DNA database in 1988 to be able to quickly link cataloged criminals to their respective crimes. The NDIS was implemented in all US territories in 1998 after the DNA Identification Act of 1994 allowed for its creation. (Federal Bureau of Investigation, 2016) This national database is compiled in the CODIS where data is separated into different levels national, state, and local. Since then criminal investigations have used DNA profiling to successfully identify suspects or prove previously convicted criminal’s innocent. Due to the increasing size of the national DNA database “from 2000 to 2010 decreased violent crime by 7–45 percent and property crime by 5–35 percent.” (Doleac, 2015). This can be proven by cross examining possible suspects with other crimes that have been committed. However, the beneficial components of using DNA profiling in these investigations have equally detrimental consequences. One of these consequences is the standard for which DNA can be taken and tested without the consent of a criminal suspect. DNA databases are raising questions of at which ethical standards they can exist. Many of these concerns are focused on “the prospect of long term bio-surveillance occasioned by the storage of genetic information in police databases and biological samples in forensic laboratories; and the possibility for the deceptive use of DNA forensic evidence in police investigations and criminal prosecution” (Thielking M., 2018). These concerns all revolve around the question of how much access should police have to DNA for uses in investigation. Many countries are trying to determine the best balance between police power and citizen privacy. In determining these boundaries, they will be able to establish laws and regulations that are associated with DNA testing. Currently there are not set governmental boundaries or regulations of what police can demand from DNA storage facilities when building a criminal case.
Ancestry DNA Testing
Today there are over 40 different world-wide based companies that claim to provide ancestry DNA testing and results. These companies send customers at home kits that they complete and the return to the company to be analyzed to find particular results. Some ancestry DNA tests discover information such as heritage or familiar relations with people. Other common DNA ancestry tests can give information on common diseases that may develop with a particular individual's lifespan. Many of these forms of DNA testing can be performed at early fetal development stages. This early fetal testing process is called no cell DNA screening tests and can be taken by a sample of the mother's blood about ten weeks into pregnancy. Common screening tests check the fetus for abnormalities in chromosomes and development of Down syndrome and other possible cognitive disabilities. Other concerns of early fetal testing are “that selective abortion of fetuses with minor abnormalities, the wrong sex, or unwanted paternity, will become normalized.” (Jong, A. D., Dondorp, W. J., Die-Smulders, C. E., Frints, S. G., & Guido M W R De Wert., 2009 ). This is concerning to many individuals especially the conservative population of America that is morally opposed to abortion. Murder is a valence issue that almost all people believe to be wrong, this means that testing individuals for disease later in life will not have the same effect that it does when in fetal development i.e. it may not result in the immediate death of an individual. However later testing of ancestry has different ethical drawbacks. Genetic testing companies do not have legally established privacy policies, clearly communicated to their customers. This lack of data security is encouraging lawmakers to look into “what personal information is collected from customers, which employees of the companies can see that information, and which third parties can buy or access the data” (Williams, R., & Johnson, P., 2006). Genetic information the most personal information that individuals can provide to companies, DNA samples and information must be protected with high security systems that will ensure that their information is not compromised. This means individuals must also know their rights to their DNA samples after testing has occurred to ensure that results are not shared with third parties. Countries are founded on basic rights which include that of privacy. New DNA companies cannot take that basic right away from their customers in regard to their DNA without informing them of their rights clearly before DNA is sent in for testing purposes. Many companies have been hacked and DNA theft has occurred. This must be resolved so that individual’s privacy and security rights are not distinguished.
FDA Regulation of LTDs
Until recently the FDA has taken an “‘enforcement discretion’ when it has the authority to regulate tests but chooses not to” (National Human Genome Research Institute, 2018) in clinical DNA and genetic testing. This approach to DNA testing in the past was not an issue or concern to the public health of individuals but now as testing has vastly expanded in size and variety this approach could be detrimental to the society. However, many individuals do not believe these regulations are in order, “insist that the FDA's action violates the rights of individuals to receive information and of 'commercial speech' and undermines democratization of health care and patient empowerment” (Yim, Seon-Hee, and Yeun-Jun Chung, 2014). Still LTDs are being distributed and a used in many facilities without tests of validity by the FDA to ensure quality and safety of such tests. In recent years, to reduce the number of DNA identity frauds and other personal breaches of data, the FDA has produced a new system for regulating such tests. By giving guidance so as to guarantee that all at home DNA testing kits are safe to use, and that information provided from such tests will not share with third party companies. The FDA’s new system tracks companies from their inception throughout the entire process of genetic testing in order to guarantee that only the tests which they have marketed are performed on the DNA and that only the recipient of that particular information is that which took the test. However, this new process is still in the drafting phase, so none of these guidances are being used in LTD tests to date.
DNA Theft
DNA Theft is the obtaining of someone's genetic information without the consent of that individual. Such theft may not always be committed by a company or agency it is also easily committed by an individual. Currently in the United States of America there is only one law that has regulations on genetic testing GINA “protects Americans from discrimination based on their genetic information in both health insurance and employment” (National Human Genome Research Institute, 2017). The problem with GINA is that its narrow focus on DNA discrimination prevents it from being used in court cases on DNA theft. As of now there are no criminal punishments for DNA profiling in the USA. DNA theft occurs more commonly in a vast number of ways than society would like to acknowledge. Many individuals that have partaken in DNA theft may not even be aware of what they did. “DNA theft falls into one of at least three different categories: celebrity DNA theft, paternity and fidelity disputes, and blackmailers and noise neighbors.” (Joh, & E., E., 2010). These three categories of DNA theft are both simple and easy to commit as stated without an individual’s consent. Celebrity DNA theft is obtaining particular things used by celebrities in a relatively recent time period without their consent. For example, taking a used fork from a celebrity at a restaurant and selling it online could be considered celebrity DNA theft because an individual took the DNA residue such as fingerprints or saliva of a celebrity without their knowledge or consent. Paternity or fidelity disputes can occur in multiple ways. For example, if an individual is unsure of the paternity of a child they may without the consent of the other prospective parent, perform an at home paternity test to ensure that the child is theirs. Other testing to prove fidelity of individuals include sending articles of clothing to be tested at labs for DNA other individuals without the knowledge or consent of the wearer. The last form of DNA theft is blackmailers and noisy neighbors. This category occurs when someone steals DNA from an individual say by a licked postage stamp or envelope. These can then be tested and linked to other information about that individual. All of these forms of DNA theft can be committed by the common man easily and without consent of individuals with no tangible consequences. Imagine the scale of DNA theft that can be performed by corporate companies if they have access to individual’s DNA. Imagine the knowledge can they determine from it.
Conclusion
DNA profiling has many benefits and roles in today's society but the drawbacks associated with these advantages overpower. Doctor patient services which promote patient confidentiality are compromised through the online companies. These newly developed online companies promote at home genetic kits that have yet to be regulated by the FDA. Without tests of validity, these LTDs could be a risk to the public safety and security of individuals. DNA testing can be helpful in determining and convicting criminal suspects and freeing falsely accused convicts. This criminal DNA information is shared in the CODIS that is given access by all criminal investigators, but individuals should be concerned about how the information is gained non-consensually and the possible use of DNA prospectively by police in criminal cases. DNA testing has opened a whole new door to the possibility of theft both intentionally and unintentionally in three main categories. Individuals are no longer certain of their rights with companies that test DNA and store it; they are also unaware of how their information is bought by third parties without their consent or knowledge. DNA testing regulations and restrictions on security and privacy need to be created and enforced for all companies that provide testing in any form from on human DNA. This lack of security is just one of many ethical consequences that DNA tests have on individuals in society.
References
- Federal Bureau of Investigation. CODIS and NDIS Fact Sheet. (2016, June 08). Retrieved from https://www.fbi.gov/services/laboratory/biometric-analysis/codis/codisand-ndis-fact-sheet
- D. C. Wertz and J.C. Fletcher, Ethics and Human Genetics: A Cross-Cultural Perspective (New York: Springer-Verlag, 1989); and D.C. Wertz and J.C. Fletcher, 'An International Survey of Attitudes of Medical Geneticists Toward Mass Screening and Access to Results,' 104 Public Health Reports 35-44 (1989).
- Doleac, J. L. (2015). The Effects of DNA Databases on Crime. SSRN Electronic Journal. doi:10.2139Institute of Medicine (US) Committee on Assessing Genetic Risks. (1994,
- January 01). Social, Legal, and Ethical Implications of Genetic Testing. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK236044//ssrn.2556948
- Joh, & E., E. (2010, September 29). DNA Theft: Recognizing the Crime of Nonconsensual Genetic Collection and Testing. Retrieved from https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1684337
- Jong, A. D., Dondorp, W. J., Die-Smulders, C. E., Frints, S. G., & Guido M W R De Wert. (2009). Non-invasive prenatal testing: Ethical issues explored. European Journal of Human Genetics, 18(3), 272-277. doi:10.1038/ejhg.2009.203
- Thielking M.. Privacy concerns? Genetic testing companies pressed by US lawmakers. (2018, June 22). Retrieved from https://geneticliteracyproject.org/2018/06/22/privacy-concerns-genetic-testing-companies-pressed-by-us-lawmakers/
- National Human Genome Research Institute. Regulation of Genetic Tests. (2018). Retrieved from https://www.genome.gov/10002335/regulation-of-genetic-tests
- National Human Genome Research Institute. The Genetic Information Nondiscrimination Act of 2008. (2017). Retrieved from https://www.genome.gov/27568492/thegenetic-information-nondiscriminationact-of-2008/
- Williams, R., & Johnson, P. (2006). Inclusiveness, Effectiveness and Intrusiveness: Issues in the Developing Uses of DNA Profiling in Support of Criminal Investigations. The Journal of Law, Medicine & Ethics, 34(2), 234-247. doi:10.1111/j.1748-720x.2006.00030.x
- Yim, Seon-Hee, and Yeun-Jun Chung. Reflections on the US FDA's Warning on Direct-to Consumer Genetic Testing. 31 Dec. 2014, www.ncbi.nlm.nih.gov/pmc/articles/PMC4330248/.
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