Ethical Issues in Patient Data Ownership

Abstract

Patient data have conventionally been thought to be well protected by the privacy laws outlined in the United States. The increasing interest of for-profit companies in acquiring the databases of large health care systems poses new challenges to the protection of patients’ privacy. It also raises ethical concerns of sharing patient data with entities that may exploit it for commercial interests and even target vulnerable populations. Recognizing that every breach in the confidentiality of large databases exposes millions of patients to the potential of being exploited is important in framing new rules for governing the sharing of patient data. Similarly, the ethical aspects of data voluntarily and altruistically provided by patients for research, which may be exploited for commercial interests due to patient data sharing between health care entities and third-party companies, need to be addressed. The rise of technologies such as artificial intelligence and the availability of personal data gleaned by data vendor companies place American patients at risk of being exploited both intentionally and inadvertently because of the sharing of their data by their health care provider institutions and third-party entities.

Inhospital Mortality, Readmission, and Prolonged Length of Stay Risk Prediction Leveraging Historical Electronic Health Records

“…Data quality, missing values, and class imbalances have been cited as some of the significant challenges in healthcare predictions, [27,28]. Additionally, the ethical implications concerning patient data security and consent are of paramount importance, [29].…”

Health information technology

“…9 Time constraints, higher acuity patients, and documentation require-ments incentivize individuals to create shortcuts and workarounds that could lead to data inaccuracies. 10,11 One example of a workaround is copying and pasting the documentation from a previous note in the EHR, which can lead to inaccurate data or duplication of information. 12 Beyond human error, problems may still present during data transfer or when data are extracted or analyzed using artificial intelligence.…”

“…Data entered by a human during a patient encounter is subject to human errors that result in inaccuracies, affecting the integrity and validity of data extracted from the EHR for research purposes 9. Time constraints, higher acuity patients, and documentation requirements incentivize individuals to create shortcuts and workarounds that could lead to data inaccuracies 10,11. One example of a workaround is copying and pasting the documentation from a previous note in the EHR, which can lead to inaccurate data or duplication of information 12.…”

“I Agree to Disagree”: Comparative Ethical and Legal Analysis of Big Data and Genomics for Privacy, Consent, and Ownership

“…Due to the simplicity of data transfer, more data may be sold by various organizations for financial gain. They might be sold to commercial companies such as Amazon, which can create questions when examining who owns the data [15]. Once this data has been sold, the patient's data is then owned by the company that bought the data.…”