Explanation of Ethical Considerations Inherent in Sharing Health Data - Research Paper

Introduction

Sharing of health data has ethical considerations that every healthcare professional should be well-versed with. One of the ethical consideration inherent in sharing of health data is privacy and confidentiality (Ozair, Jamshed, Sharma, & Aggarwal, 2015). The term privacy can be defined as the right "to be let alone." Privacy can also be described as the right of a person to keep information regarding themselves from being exposed to others; the claim of a person to be let alone, from interference or surveillance from other people, organizations, or government. Because of privacy issues, patients' information should only be released to other people, organizations, or the government only after permission has been sought from the patients or when it is dictated by law. In situations where a patient cannot give consent for the use of his or her health-related data, because of mental incapacity or age, decisions regarding sharing of the patient's information are provided by a legal guardian or a legal representative of the patient (Ozair et al., 2015).

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Moreover, information shared as a result of clinical interaction is treated confidentially and protected (Leufkens, 2014; Porsdam Mann, Savulescu, & Sahakian, 2016). According to Zandbergen (2014), confidentiality can be ensured in geocoded data, such as a patient's address, through geographic masking. This involves the application of a specific quantity of random perturbation systematically to decrease reidentification risk. Another important ethical consideration in sharing of health data is a security breach (Ozair et al., 2015). Security breaches are a threat to patient's privacy when confidential health data is made public without the patient's consent or authorization. Security breaches can be prevented through encryption (Thilakanathan, Chen, Nepal, Calvo, & Alem, 2014). Data encryption refers to the process of encoding data in a manner that only authorized parties can read it (Information Resources Management Association, 2018).

Informed consent is another important ethical consideration in sharing of patients' healthcare data. According to Porsdam Mann, Savulescu, and Sahakian (2016), informed consent is mandatory in research studies involving human participants. The need for informed consent can be traced to the Nuremberg Code and the original Declaration of Helsinki. It is vital that the patients are informed how their health information will be used to enable the patients to decide whether or not to allow other people, researchers, and government to share or use data. In studies involving young children, informed consent should be sought from the parents. However, there are cases where informed consent is not necessary for health research.

Importance of Protecting Community's Health

I believe it is more important to protect the community's health than to protect an individual's data. One of the reasons why it is more important, from an ethical standpoint, to protect the community's health rather than an individual's identity is the need to protect the community from a possible health threat. For example, if there is an emergence of a deadly new illness which has only affected few members of the community but can wipe the whole community if not quickly addressed by healthcare researchers, there is no need to seek consent from the victims when collecting data for medical research. In such a case, the community's health interests supersede individual's rights to privacy.

The need to violate an individual's rights in favor of the interests of the larger population has also been addressed by the Centers for Disease Control and Prevention (CDC). According to the CDC (n.d.), when conducting health research, a covered entity can utilize or disclose personal health information for health research without seeking consent if it gets approval from a privacy board or an institutional review board, for research on a decedent's information, or activities preparatory to research.

Ethical Considerations in Disease Surveillance and Informatics Examples

I believe that ethical justification exists for disease surveillance and informatics, especially conducting public health surveillance without patient consent when the disease being investigated or monitored is of great public concern. For instance, I believe that in the case of lung cancer, the Surveillance, Epidemiology, and End Results Program is ethically justified to collect and analyzed data from the states with the aim of determining the prevalence and incidence of lung cancer and other types of cancer. This is because cancer is one of the leading causes of death worldwide. Consequently, strong efforts, including surveillance, should be directed toward exploring how the disease prevalence can be decreased in the future.

Using surveillance data from the Surveillance, Epidemiology, and End Results Program (U.S. Department of Health and Human Services, n.d.), the United States' federal government as well as the states' government can devise policies directed towards curbing the further rise in the future. Overall, in a situation where the benefits accrued by a wider population supersedes those of an individual, like in the case of cancer disease surveillance, then those who are involved in surveillance can use patients' information without seeking approval from the patient.

References

CDC (n.d.). HIPAA privacy rule and public health. Retrieved from https://www.cdc.gov/mmwr/preview/mmwrhtml/m2e411a1.htm

Information Resources Management Association (Ed.). (2018). Game theory: breakthroughs in research and practice. Hershey, PA, USA: IGI Global.

Leufkens, H. G. (2014). Confidentiality in epidemiology. Wiley StatsRef: Statistics Reference Online. https://doi.org/10.1002/9781118445112.stat05230

Ozair, F. F., Jamshed, N., Sharma, A., & Aggarwal, P. (2015). Ethical issues in electronic health records: A general overview. Perspectives in Clinical Research, 6(2), 73-76. https://doi.org/10.4103/2229-3485.153997

Porsdam Mann, S., Savulescu, J., & Sahakian, B. J. (2016). Facilitating the ethical use of health data for the benefit of society: electronic health records, consent and the duty of easy rescue. Philosophical Transactions. Series A, Mathematical, Physical, and Engineering Sciences, 374(2083). https://doi.org/10.1098/rsta.2016.0130

Thilakanathan, D., Chen, S., Nepal, S., Calvo, R., & Alem, L. (2014). A platform for secure monitoring and sharing of generic health data in the Cloud. Future Generation Computer Systems, 35, 102-113. https://doi.org/10.1016/j.future.2013.09.011

U.S. Department of Health and Human Services (n.d.). Overview of the SEER program. Retrieved from https://seer.cancer.gov/about/overview.html

Zandbergen, P. A. (2014). Ensuring confidentiality of geocoded health data: assessing geographic masking strategies for individual-level data. Advances in Medicine, 2014, 1-14. https://doi.org/10.1155/2014/567049