Dilemma Of Informed Consent

Anything outside of our permission or control is considered an assault. Despite our beliefs and what should be, this was quite contrary with Henrietta Lacks. An article in The Scientist noted “The global rise in biobanks – currently a $1 billion industry that is expected to grow to $2.25 billion by 2015 – also introduces other ethical concerns, including patenting of biological materials, whether donors control what happens to their tissue, whether donors should be compensated, and the privacy issues dramatically highlighted by the online publication of the HeLa genome.” Enhancing public awareness is paramount around this topic along with engaging in the ethical complexities effectively, which in the end could build awareness, boost trust, and improve an understanding around the purpose of biobanks and how they operate. Henrietta Lacks case presented a beneficial context for analyzing the legal and ethical issues that may be raised when human tissues are being used in medical research.

In 1951, Henrietta Lacks had cells removed from her body without her permission, since then there have been many changes in the way medical researchers get their information. For example, medical researchers today need to obtain consent from the individuals and the parents of children from whom they are performing biomedical tests on as well as an Institutional Review Board (IRB). In addition, in 1996 the United States introduced (“HIPPA Regulations”) that offer data privacy and security provisions for safeguarding medical information. In the case of Henrietta Lacks and her HeLa cells, her rights and her privacy did not exist, so new policies and laws paved the way to help protect the rights of

As research and technology progress forward in time, the ethical considerations that must be taken along with, not only method of study but social ramifications continues to grow exponentially. At the time when cells were taken unknowingly from Mrs. Lacks, there were not strict regulatory guidelines as to how consent should be required along with many other now ill-practice methods of medicine seen at the time. Despite agreeing that the

Imagine your tissues growing around the world daily, and they never stop. This happened to Henrietta Lacks. She is best known for the cells that formed the HeLa cell line. This cell line has been used extensively in medical research ever since its successful culturing in 1951. HeLa cells have sparked a large debate on ownership of tissues and cells. Discussions have occured about these issues ever since HeLa cells were discovered. Still today millions of tissue samples have been used without the owner’s knowledge. If a person’s identity has been removed from the tissue, scientists do not have to ask permission to use them for their benefit. This has sparked problems because people’s opinion on this vary depending on what they know about DNA

In The Immortal Life of Henrietta Lacks, Rebecca Skloot asserts that an individual should own the right their own human tissue after it has been removed. Furthermore, several other accounts similar to Henrietta’s situation emphasize the importance of informed consent. Although in some cases, consent forms were signed, these were not informed decisions. As doctors in all of the cases presented have failed to disclose to their patients the value of their bodies. Even though this occurrence may hinder future scientific research, it is possible that the possession of someone’s DNA could ruin the rest of their lives, as it identifies what diseases that they may acquire. Therefore, to ensure the protection of our rights, it is moralistic that individuals

The Immortal Life of Henrietta Lacks is a prime example in modern society of the rights and policies surrounding informed consent and privacy. Henrietta Lacks was an African American woman whose cancer cells were biopsied from her body, tested, and resulted in several medical breakthroughs. She gave life to immortal cancer cells known as HeLa cells, which resulted in vaccines for polio, cloning, vitro fertilization, and gene mapping. During the 1950s, not many African Americans had access to proper care, much less, had the background and literacy to understand medical jargon, based on this Henrietta Lacks was never able to provide proper consent. The legalities of what happened all those years, and the turnover in what her personal cells did for science is discussed heavily. The positions held on the mandate for informed consent and specimen privacy will be divulged.

When Henrietta Lacks found a lump in her cervix; she went to Johns Hopkins Hospital in Baltimore, Maryland to sought for help. Doctor Howard Jones did a biopsy on the mass that was taken from Henrietta’s cervix, and he diagnosed her with stage one cervix cancer. Her cell culture and tumor was used for growing human cells outside of the body in Gey’s lab and the HeLa specimen is the one and only that work. This experiment has changed history forever and her cells was sent to labs around the world without Henrietta’s consent. It is unacceptable and unethical for them to use patients for research without their permission. The actions of George Gey’s and Johns Hopkins Hospital make us question their professional ethics which is also the reoccurring

Lacks’s story is unusual because she lost her anonymity. But I’ve talked to other still-anonymous donors with strikingly similar experiences. Like the Lacks family, they’re proud they helped science. They believe tissue research is important, but they wish they’d been asked permission from the start, to avoid difficulties that followed: the shock of learning they were part of research, debates over who controlled samples, questions over profits. I’ve also heard from scientists and medical professionals who believe this transparency is overdue. And patients who want to control their tissues to, say, ensure their samples are used to study only their specific rare disease. So far, few of these people are part of the discussion. The Common Rule changes, like most such proposals, haven’t been widely publicized, and they’re laid out in a thick document even experts find confusing. But the Department of Health and Human Services has posted a brief summary and several explanatory videos. With few exceptions — like a public health emergency — the revised rule would require informed consent for research on all biospecimens, but not all genetic information inside them. How detailed that consent will be is up to researchers, but it can’t be less than “broad consent.” In a widely criticized move, the consent form template that would generally be required for “broad consent” hasn’t been released yet. Much of the debate has focused on what that form might look like, whether it can

OWNERSHIP OF CELLS RAISES STICKY ISSUES … WHO SHOULD HAVE RIGHTS TO A PATIENT’S CELLS? … WHO TOLD YOU YOU COULD SELL MY SPLEEN? (Skloot, Rebecca Scientists, lawyers, ethicists, and policymakers debated the issues: some called for legislation that would make it illegal for doctors to take patients’ cells or commercialize them without consent and the disclosure of potential profits; others argued that doing so would create a logistical nightmare that would put an end to medical progress.(Skloot, Rebecca (2010-01-28). The Immortal Life of Henrietta Lacks (p. 204). Crown Publishing Group. Kindle

Ethical concerns always arise when conducting researches that involve participation of human beings. These concerns pertain to such values as privacy, autonomy, bodily integrity, and dignity, along with legal matters such as confidentiality, patient safety, and informed consent (Kamp, M., B., 2006). After reading about Henrietta Lacks (HeLa cells), substantial amount of ethical issues were executed. Race was a big issue in 1950’s, were doctors are not worried about African American and indigents rights back then. It is uncommon for any physicians to precede a research without their consent or knowledge. Although, looking back from today, taking her cells without informed consent is a clear sign of violating patient’s rights. Thus, Henrietta

Consent Granted In 1951, a young woman named Henrietta Lacks with cervical cancer had her tumor surgically removed by John Hopkins University. After Henrietta’s tumor was removed, the doctor performing her surgery scraped a tissue sample into a Petri dish, without her consent, to be used in medical research. What was discovered was that Henrietta’s cells were immortal; they continued to reproduce time and time again. Her cells were vital for gene mapping and to cure polio, saving millions of lives. However, if the scientists had asked for consent, Henrietta could have said no, costing millions their lives.

Since its publication, The Immortal Life of Henrietta Lacks by Rebecca Skloot has received numerous awards and been placed on more than 60 “best of” lists. This acclaim has even inspired a TV movie based on Skloot’s book which is currently in post-production and set to be released in 2017 for the HBO network. The recognition derived by the HeLa story is a driving force in the current environment of bioethicists’ arguments. To highlight the consequences of the book this review will cover current legislation policies, the use of human samples in science and my personal reflections on the book.

HeLa cells are a well-known line of cells that have shaped science and medicine in astounding ways. They have been launched into space, helped develop a vaccine against polio, and are still used in many laboratory experiments. Without them, science may not have been able to advance so quickly and many of the things that make our lives so easy today would not exist. These cells were taken from a tissue sample of a woman named Henrietta Lacks’ cervix- without her permission. Even though many say that this is unethical, we must admit that the benefits that mankind has reaped because of these cells far outweigh the fact that the donor was not asked before her tissues were removed. The

Spark: While this is an extraordinary story that presents multiple perspectives, I don’t believe the magnitude of those scientific achievements outweigh the fact that doctors did not obtain consent from Ms. Lacks. As health care professionals our obligation is to do what is morally ethical for our patients, not obtaining patient consent or profiteering off patients tissue are completely unethical - such behavior will demonstrate deception in medicine and it can ultimately create lack of trust between patient and healthcare providers. Although informed consent was traditionally not obtained during this time, this is a case that warrants that Ms. Lacks get proper recognition for the advancement discovered through research on her tissue.

The utilization of stored clinically derived human tissue in biomedical research invokes significant ethical concerns over the inherent value of human tissue, informed consent and property rights to ones tissues. In this paper I will argue that standardized informed consent for all future use of human tissues should be legally required but individual ownership over these tissues should not be recognized nor monetarily compensated. I explicate my argument from the approach of virtue ethics and the ethics of care. I introduce the case of John Moore and the cell line, Mo, derived from his tissues to illustrate the moral concerns with regard to the doctor-patient relationship in