HCS 465 Week 4 Ethics in Health Care Research Example

Cells Taken Without Asking: What the HeLa Story Teaches About Consent, Privacy and Benefit Sharing, and How a Hospital's Biobank Should Answer Those Questions Today

[Student Name]

University of Phoenix

HCS/465: Health Care Research Utilization

Week 4 Assignment

[Instructor Name]

[Date]

The hospital biobank described is a composite written for a model paper; historical facts come from the sources listed.

In 1951, Henrietta Lacks, a 31-year-old Black mother of five, was treated for cervical cancer at Johns Hopkins Hospital. During her treatment, a sample of her tumor was taken and given to a researcher who had been trying, without success, to grow human cells in the laboratory. Her cells grew and kept growing. Named HeLa, they became the first human cell line to survive indefinitely and were used in research on polio vaccines, cancer, genetics and much more (Skloot, 2010). Henrietta Lacks died later that year. Neither she nor her family was asked for permission, and her family did not learn about the cells for more than twenty years. This paper examines what her story teaches about research ethics and how a hospital should apply those lessons today.

What Went Wrong

Several ethical problems run through the HeLa story. The cells were taken and used without consent. The family was not told, even as HeLa cells were sold commercially and became central to profitable research. Later, researchers contacted family members for blood samples without explaining why, and in 2013 the HeLa genome was published online, exposing genetic information about living relatives. Beskow (2016) notes that the case has become a touchstone for debates about biospecimens because it combines consent, privacy, commercialization and respect for families in one story.

The Belmont Report's Principles

The Belmont Report, issued in 1979 by a national commission created after the Tuskegee syphilis study became public, named three principles to guide studies involving people (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). Respect for persons asks researchers to honor people's right to decide for themselves and to give extra protection to anyone less able to do so, and it is the root of informed consent. Beneficence means doing no harm, maximizing possible benefits and minimizing possible harms. Justice means distributing the burdens and benefits of research fairly, so that some groups do not bear the risks while others enjoy the rewards.

Applying the Principles to HeLa

Respect for persons was violated because Henrietta Lacks was never asked. Beneficence was mixed: the science produced enormous benefits, but the family bore harms, including loss of privacy and distress. Justice was violated in a way that many see as characteristic of its era: a poor Black patient treated in a segregated ward provided material that generated knowledge and profit for others, while her family struggled to afford health care for decades.

From Principles to Rules

The Common Rule, the federal policy for protecting human research subjects, turned the Belmont principles into requirements for federally funded research, including review by an institutional review board and informed consent. Its 2018 revision added provisions on broad consent for storing and using identifiable biospecimens and data for future research. In 2013, the National Institutes of Health reached an agreement with the Lacks family that gave family members a role in deciding who can use the full HeLa genome data.

A Present-Day Decision: The Hospital Biobank

A composite 500-bed academic hospital wants to create a biobank of leftover blood and tissue from clinical tests for future research. The questions are the same ones the HeLa story raises, now in the form of policy choices.

Consent. The hospital could use de-identified leftover samples without consent, which current federal rules often allow; ask patients for broad consent at registration to future research use; or ask for specific consent for each study. Beskow (2016) describes these trade-offs: broad consent respects autonomy while remaining practical, but patients may not fully understand what they agree to. The hospital chooses broad consent with a clear opt-out and a simple explanation.

Privacy. Genomic data can reidentify people even without names. The hospital will store samples and data under access controls, share only with approved researchers under data use agreements and never publish full genomes without additional review.

Community engagement and justice. The hospital serves a large Black and Latino population. It will form a community advisory board, including patients, to review biobank policies and proposed studies, so that the communities whose samples fuel research help decide how they are used.

Benefit sharing. The hospital will report research findings back to the community in plain language and commit a share of any licensing revenue from biobank research to community health programs.

A Policy Checklist

Before any biobank opens, a health administrator should be able to answer yes to these questions: Have patients been told, in plain language, how their samples may be used? Can they opt out easily? Are identifiable data protected beyond what the law requires? Do the communities served have a voice? Will benefits return to those communities?

What Changed for the Lacks Family

Decades after the cells were taken, some measure of recognition came. The agreement with the National Institutes of Health gave the family a voice in access to genomic data, and the family has been publicly acknowledged by institutions that benefited from HeLa research. In 2021 the family filed a lawsuit against a biotechnology company over its commercial use of HeLa cells, which was settled in 2023. These steps did not undo the original wrong, but they show that questions of consent and benefit can be revisited long after the fact, and that institutions are judged by how they respond when an old ethical failure comes to light.

Competing Values

These choices involve trade-offs. Stricter consent protects autonomy but may reduce participation and slow research that benefits everyone. Community review adds time. A manager's task is to balance these values openly rather than default to whatever is legally sufficient.

Conclusion

The HeLa story shows research ethics failing on consent, privacy and justice at once. The Belmont principles and federal rules answer some of those failures, but a hospital building a biobank today still must decide how to ask, how to protect and how to share. Answering those questions with the HeLa story in mind is how research ethics becomes management practice.

References

Beskow, L. M. (2016). Lessons from HeLa cells: The ethics and policy of biospecimens. Annual Review of Genomics and Human Genetics, 17, 395-417. https://doi.org/10.1146/annurev-genom-083115-022536

National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. U.S. Department of Health and Human Services. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html

Skloot, R. (2010). The immortal life of Henrietta Lacks. Crown Publishers.