(Un)ethical Usage of Genomic Data
By Riya Srivastava
Confidentiality means the obligation of a person to not disclose any information shared with them with an expectation to keep it private. In the biomedical space, clinicians also must not disclose patient’s information to any third party. It is a public expectation that information received by healthcare professionals in the context of the clinical relationship will not be disclosed to anyone. This non-closure helps in protecting patient’s privacy and gives them complete autonomy over their health-related information. However, when it comes to healthcare, confidentiality and consent are major issues. For instance, a patient does not give his consent to the clinician to share the test results declaring his alcohol consumption with his family. In this case, the clinician might respect the patient’s decision to keep this information confidential. On the other hand, the situation is that of a patient who is asking to keep his HIV+ test results confidential from his wife, whom he has cheated on by having unprotected intercourse with multiple sex workers. Here, the clinician is forced to go out of his way, breach the patient’s confidentiality, and share the test results with his wife for the sake of her safety. The ethical breach of confidentiality and consent is also faced in the collection and use of genomic data of an individual or of masses.
Genomic Data or Genetic Data could be used in ways that one would have never imagined. Since this data has the power to learn about anyone’s personal, physical or biological life, it is considered to be highly critical. From the medical checkups we take to the fingerprints on our laptops, we shed off numerous sources of our DNA everyday and almost everywhere. This data can be used in both positive and morally questionable ways.
Surreptitious genetic testing is one potential threat to people’s genetic information privacy. Surreptitious DNA testing happens when a sample containing a person’s genetic information is accessed without the knowledge or consent of that person and when that sample is tested without the knowledge or consent of that person. (Shedding Privacy Along with our Genetic Material, AMA Journal of Ethics) One can be discriminated against if surreptitious testing is conducted without their consent. For instance, in recruitment procedures, the hiring team can use your lip print from the glass of water they offered you to use. This way, they can gain knowledge of your alcohol consumption, depression, aggressiveness, etc., and can form their own biases based on the results they receive. Moreover, this DNA sample could also be used to influence the money the company spends on your medical benefits. Since your future diseases could be tracked by these samples, you might even not get hired altogether, saving the company millions of money. To ensure that one’s genomic data is not being used without people’s consent and they are not being discriminated against on such a basis, policies come into play. Genetic privacy laws and legislation protecting persons from genetic discrimination differ extensively worldwide. For example the Genetic Information Non-Discrimination Act (GINA) of the United States. India does not have a well-defined policy to safeguard its people from getting discriminated against based on their genetic makeup. For now, people are being protected from such discrimination under Article 14 of the constitution which guarantees that people are treated fairly under the law.
Using ethical and unethical standards of techniques, large DNA databases are formed across the world. Ethical means collecting genetic information by obtaining the informed consent of the patient/participant. And unethical ways mean extracting genetic information from surreptitious tests, cheaper at-home genetic test kits available online, or fraudulent access into the database of any website/organization/hospital with the help of dishonest employees. These big databases, which also include information without the person’s consent, can be bought by entities for varied motives. It could be bought by insurance companies to generate profits by targeting personalized policies. Using these databases, various ancestry websites like 23andMe have built a billion-dollar market where the customers, after submitting their saliva samples, could get details of their genetic ethnicity and personalized health details for any disease they may have. Another positive use of genomic data is that there is a quick advancement of precision medicine. Contemporary individualized healthcare is made possible by the easy availability of large databases and sufficient computational capacity to communicate and analyze results. In addition to this, genetic information technology could be used to find missing persons as well. There is also a notion that genetic information technology could be used for criminal investigative purposes. Though collecting DNA samples from crime sites and tracking the criminal by the use of high technology and DNA databases might seem to be a progressive step, there is a high chance that criminals frame someone else by leaving an innocent person’s DNA samples on the site of crime. And to talk of privacy, are these surreptitious tests by government agencies ethically valid? Are they not breaching one’s privacy here? Well, certainly yes. But this argument falls into what we discussed initially. If breaching an individual’s privacy without their consent can save the lives of others and can provide justice to the victims, then extending the boundary of confidentiality for the public interest is the only possible solution that is left.
The moral importance of medical privacy is mirrored in the data protection and security policies that local and national governments worldwide have established. Few countries outright ban the use of genetic data while others have minimal laws on them. In India, The DNA Technology (Use and Application) Regulation Bill was introduced in Lok Sabha in 2019. The bill provides for the regulation of the use of DNA technology for establishing the identity of persons. While it provides for a National DNA Bank for offenses under the Indian Penal Code 1860, and other missing cases, it also specifies penalties for disclosure of DNA information and using DNA samples without authorization. (PRS Legislative Research) It is a step towards using technology for solving crime cases efficiently. However, the opposition raises a valid point on privacy, stating- “to ensure privacy is not violated wantonly and egregiously. More safeguards should certainly be considered as we gain further experience with the use of technology,”. Without ensuring personal data protection, the possibility of misuse of these databases could cause potential harm.
When we talk of confidentiality in healthcare, especially in the use of genomic data, protecting one’s information in today’s big data world is a huge problem. Therefore, in conclusion, we can say that we do not and cannot have control over the information we shed mindlessly. While taking DNA tests, one should communicate with the organization about the level of privacy they’d prefer because these tests can reveal some hidden secrets about life that they may feel embarrassed about. While taking medical tests, we must be aware of how our data could be used without our knowledge. Once our genetic information gets public, it might stay that way forever. One should be aware of the consequences of their decision and then act accordingly. This collecting and handling of genetic information without a person’s knowledge raises serious bioethical and privacy concerns. It makes us question if our genetic data is even ours. Do we have complete autonomy over our personal information? Are we even all by ourselves? Or the scary one- Are we being tracked all the time?
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Sanskriti Singh is an undergraduate student pursuing her honours degree in Philosophy from Indraprastha College for Women, University of Delhi. She loves starting her day with a cup of coffee and singing her heart out. She is a social impact enthusiast and is working for students from marginalized societies by leading Project Divit. Reading and contemplating philosophical works with their relevance in today’s world is what interests her!