by Tara E. l February 1, 2024
Have you ever heard the incredible story of Henrietta Lacks? It’s a tale that not only changed the world of medicine but also shines a light on the importance of understanding our history, especially for Black communities. Henrietta Lacks, a Black woman, made an unknowing yet monumental contribution to science. But her story also reflects the fears and concerns many Black people have about medical treatment. Let’s dive into Henrietta’s story, understand its impact, and discover how to use this knowledge to advocate for our health without letting the past hold us back.
Who Was Henrietta Lacks?
Henrietta Lacks was a young mother living in Baltimore, Maryland, in the 1950s. She suffered from cervical cancer and received treatment at Johns Hopkins Hospital. During her treatment, doctors took a sample of her cancer cells without her knowledge or consent. These cells did something amazing: they kept growing and multiplying outside her body, something no other cells had ever done. This was a huge breakthrough in medical research. Her cells, named HeLa cells, became the most important and widely used in medical research, helping develop vaccines, cancer treatments, and much more.
The Fear and Distrust in the Black Community
The story of Henrietta Lacks is important for many reasons. It shows us how Black people have been treated unfairly in the past, especially in medical situations. Her cells were used without her permission, and for a long time, her family didn’t even know about it. This story is one of the reasons why some Black people today are afraid of going to the doctor or participating in medical research. Many worry they might be treated unfairly or their rights might be ignored.
The Importance of the Henrietta Lacks Story
But Henrietta’s story is not just about the past. It’s a lesson about the power of knowledge and the importance of advocating for our health. Her story, like so many others, emphasized the need for changes in medical ethics and laws about how patients’ samples can be used. The case of Henrietta Lacks highlighted significant issues in medical ethics, particularly around consent and the use of biological samples.
Laws and Standards Since Henrietta Lacks?
Since Mrs. Lacks, there have been several laws and ethical standards developed to protect patients and their rights over their own biological materials:
- The Common Rule (1991): Formally known as the Federal Policy for the Protection of Human Subjects, it was established to provide guidelines for the ethical conduct of research involving human subjects. It requires informed consent from research participants and oversight by Institutional Review Boards (IRBs).
- Health Insurance Portability and Accountability Act (HIPAA) (1996): While not directly resulting from the Henrietta Lacks case, HIPAA was influenced by growing concerns about patient privacy, including issues raised by her story. HIPAA includes provisions for the protection of personal health information.
- The Genetic Information Nondiscrimination Act (GINA) (2008): Again, not a direct consequence of the Lacks case, but GINA protects individuals from discrimination based on their genetic information in health insurance and employment, reflecting growing awareness of genetic privacy.
- Revisions to the Common Rule (2017): The Common Rule was updated to strengthen further the protections for individuals who participate in research, including requirements for more comprehensive consent processes regarding the storage and future use of biological specimens.
- State-Level Biobank Regulations: Various states have enacted their own laws to regulate biobanks and the use of biological samples, often requiring explicit consent from donors for their tissues to be used in research.
It’s important to note that her case is a driving force behind broader changes in research ethics and laws designed to protect patient’s rights.
Did The Lacks Family Get Justice?
According to an article published by Science.org on August 7, 2023, the family of Henrietta Lacks recently reached a settlement with Thermo Fisher Scientific regarding the use of Lacks’ cells, which were taken without consent and led to significant scientific advancements. The settlement details are confidential, and no legal precedent was established due to the lack of a ruling. The family’s lawyers, highlighting the case’s racial inequity, are considering additional lawsuits against entities profiting from HeLa cells. The settlement reflects a trend toward acknowledging patients’ rights over their biological materials. Legal experts suggest the case might influence future unjust enrichment claims, where benefits are derived from someone’s cells without proper consent.
Advocating for Health Today
So, what can we learn from Henrietta Lacks? Her story teaches us to ask questions and seek understanding regarding our health. If something doesn’t feel right, it’s okay to speak up. It’s important to find doctors and medical professionals who listen to us and respect our concerns. We should also learn more about our health and medical rights to make informed decisions.
Taking Action for Better Health
Taking care of our health is so important. We should attend regular check-ups, get vaccinated, and participate in health screenings. These actions can help prevent diseases and catch any health problems early when they are easier to treat. Henrietta Lacks didn’t have the choice to be an advocate for her health, but we do. We can honor her legacy by being proactive about our health and ensuring our voices are heard.
Bringing Communities Together
Henrietta’s story also reminds us that we’re not alone in our health journey. We can support each other in our communities by sharing information. We can encourage each other to get medical care and help each other understand our rights. Community health fairs, local clinics, and support groups are great places to start.
Conclusion: A Legacy of Strength and Knowledge
Henrietta Lacks’ story is a powerful reminder of our past, but it’s also a beacon of hope for the future. It shows us the importance of understanding our history, advocating for our rights, and caring for our health. By learning from Henrietta’s story, we can move forward with strength and knowledge, ensuring better health for ourselves and our communities. Let’s use the lessons from the past to build a healthier and more informed future.