Informed consent is a phrase often used in law to indicate that the consent a person gives meets certain minimum standards. As a literal matter, in the absence of fraud, it is redundant. An informed consent can be said to have been given based upon a clear appreciation and understanding of the facts, implications, and future consequences of an action. In order to give informed consent, the individual concerned must have adequate reasoning faculties and be in possession of all relevant facts at the time consent is given. Impairments to reasoning and judgment which may make it impossible for someone to give informed consent include such factors as basic intellectual or emotional immaturity, high levels of stress such as PTSD or as severe mental retardation, severe mental illness, intoxication, severe sleep deprivation, Alzheimer's disease, or being in a coma. This term was first used in a 1957 medical malpractice case by Paul G. Gebhard.

Some acts can take place because of a lack of informed consent. In cases where an individual is considered unable to give informed consent, another person is generally authorized to give consent on his behalf, e.g., parents or legal guardians of a child (though in this circumstance the child may be required to proved informed assent) and caregivers for the mentally ill.

In cases where an individual is provided insufficient information to form a reasoned decision, serious ethical issues arise. Such cases in a clinical trial in medical research are anticipated and prevented by an ethics committee or Institutional Review Board.

Assessment of consent[link]

Informed consent can be complex to evaluate, because neither expressions of consent, nor expressions of understanding of implications, necessarily mean that full adult consent was in fact given, nor that full comprehension of relevant issues is internally digested. Consent may be implied within the usual subtleties of human communication, rather than explicitly negotiated verbally or in writing. In some cases consent cannot legally be possible, even if the person protests he does indeed understand and wish. There are also structured instruments for evaluating capacity to give informed consent, although no ideal instrument presently exists.

There is thus always a degree to which informed consent must be assumed or inferred based upon observation, or knowledge, or legal reliance. This especially is the case in sexual or relational issues. In medical or formal circumstances explicit agreement by means of signature which may normally be relied upon legally, regardless of actual consent, is the norm. This is the case with certain procedures, such as DNR.

Brief examples of each of the above:

1. A person may verbally agree to something from fear, perceived social pressure, or psychological difficulty in asserting his true feelings. The person requesting the action may honestly be unaware of this and believe the consent is genuine, and rely upon it. Consent is expressed, but not internally given.
2. A person may state he understands the implications of some action, as part of his consent, but in fact has failed to appreciate the possible consequences fully and later deny the validity of his consent for this reason. Understanding needed for informed consent is stated to be present but is in fact (through ignorance) not present.
3. A person may move from friendship to sexual contact on the basis of body language and apparent receptivity, but very few people on a date that results in sexual contact have explicitly asked the other if his or her consent is informed, if he does in fact fully understand what is implied, and all potential conditions or results. Informed consent is implied (or assumed unless disproved) but not stated explicitly.
4. A person below the age of consent may agree to sex, knowing all the consequences, but his or her consent is deemed invalid as he is deemed to be a child unaware of the issues and thus incapable of being informed consent. Individual is barred from legally giving informed consent, despite what they may feel (1)
5. In some countries (notably the United Kingdom), individuals may not consent to injuries being inflicted upon them, and so a person practicing sadism and masochism upon a consenting partner may be deemed to have caused actual bodily harm without consent, actual consent notwithstanding. Individual is barred from legally giving informed consent, despite what they may feel (2). See also Spanner case and 'consensual non-consensuality'.
6. A person signs a legal release form for a medical procedure, and later feels he did not really consent. Unless he can show actual misinformation, the release is usually persuasive or conclusive in law, in that the clinician may rely legally upon it for consent. In formal circumstances, a written consent will usually legally override later denial of informed consent (unless obtained by misrepresentation)
7. A person or institution (e.g., a school or childcare professional) exposes a minor to non-age-appropriate material, in any media format, without the expressed informed consent of the minor's parent or legal guardian. Informed consent in this instance goes to the argument of competency on the part of the minor. An example would be the showing of an R rated movie to a 12-year-old by an educational institution without the informed consent of the parent or legal guardian.
8. Informed consent in the U.S. can be overridden in emergency medical situations pursuant to 21CFR50.24, which was first brought to the general public's attention via the controversy surrounding the study of Polyheme.

Elements of valid informed consent[link]

For an individual to give valid informed consent, three components must be present: disclosure, capacity and voluntariness.^{[1] [2]}

• While Disclosure requires the researcher to supply the subject with the information necessary to make an autonomous decision, the investigators must ensure that subjects have adequate comprehension of the information provided. This latter requirement implies that the consent form be written in lay language suited for the apprehension skills of subject population, as well as assessing the level of understanding during the meeting.

• Capacity pertains to the ability of the subject to both understand the information provided and form a reasonable judgment based on the potential consequences of his/her decision.

• Voluntariness refers to the subject’s right to freely exercise his/her decision making without being subjected to external pressure such as coercion, manipulation, or undue influence.

Waiver of Informed Consent requirement[link]

Waiver of the consent requirement may be applied in certain circumstances where no foreseeable harm is expected to result from the study or when permitted by law, federal regulations, or if an ethical review committee has approved the non-disclosure of certain information.^[3]

Besides studies with minimal risk, waivers of consent may be obtained in a military setting. According to 10 USC 980, the United States Code for the Armed Forces, Limitations on the Use of Humans as Experimental Subjects, a waiver of advanced informed consent may be granted by the Secretary of Defense if a research project would:^[4]

1. Directly benefit subjects.
2. Advance the development of a medical product necessary to the military.
3. Be carried out under all laws and regulations (i.e., Emergency Research Consent Waiver) including those pertinent to the FDA.

History[link]

"Informed consent" is a technical term with a modern meaning. In tracing its history, some scholars have suggested tracing the history of checking for any of these practices:^[5]:54

1. a patient agrees to a health intervention based on an understanding of it
2. the patient has multiple choices and is not compelled to choose a particular one
3. the consent includes giving permission

These practices are all part of what constitutes informed consent and their history is the history of informed consent.^[5]:60 They combined to form the modern concept of informed consent rose in response to particular problems which happened in modern research.^[5]:60 Whereas various cultures in various places practiced informed consent, the modern concept of informed consent was developed by people who drew influence from Western tradition.^[5]:60

Medical history[link]

Historians cite a series of medical guidelines to trace the history of informed consent in medical practice.

The Hippocratic Oath, a 500 BCE Greek text, was the first set of Western writings giving guidelines for the conduct of medical professionals. It advises that physicians should conceal most information from patients in order to give the patients the best care.^[5]:61 The rationale is a beneficence model for care; the doctor knows better than the patient and therefore should direct the patient's care because the patient is not likely to have ideas which would be better than the doctor's.^[5]:61

Henri de Mondeville was a French surgeon who in the 1300s wrote about medical practice. He traced his ideas to the Hippocratic Oath.^[5]:63[6][7] Among his recommendations were that doctors "promise a cure to every patient" in hopes that the good prognosis would inspire a good outcome to treatment.^[5]:63 Mondeville never mentioned getting consent, but did emphasize the need for the patient to have confidence in the doctor.^[5]:63 He also advised that when deciding therapeutically unimportant details the doctor should meet the patients' requests "so far as they do not interfere with treatment".^[8]

Benjamin Rush was an 18th century United States physician who was influenced by the Age of Enlightenment cultural movement.^[5]:65 Because of this, he advised that doctors ought to share as much information as possible with patients. He recommended that doctors educate the public and respect a patient's informed decision to accept therapy.^[5]:65 There is no evidence that he supported seeking a consent from patients.^[5]:65 In a lecture titled "On the duties of patients to their physicians", he stated that patients should be strictly obedient to the physician's orders; this was representative of much of his writings.^[5]:65 John Gregory, Rush's teacher, wrote similar views that a doctor could best practice beneficence by making decisions for the patients without their consent.^[5]:66[9]

Thomas Percival was a British physician who published a book called Medical Ethics in 1803.^[5]:68 Percival was a student of the works of Gregory and various earlier Hippocratic physicians.^[5]:68 Like all previous works, Percival's Medical Ethics makes no mention of soliciting for the consent of patients or respecting their decisions.^[5]:68 Percival said that patients have a right to truth, but when the physician could provide better treatment by lying or withholding information, he advised that the physician do as he thought best.^[5]:68

When the American Medical Association was founded they in 1947 produced a work called the first edition of the American Medical Association Code of Medical Ethics.^[5]:69 Many sections of this book are verbatim copies of passages from Percival's Medical Ethics.^[5]:69 A new concept in this book was the idea that physicians should fully disclose all patient details truthfully when talking to other physicians, but the text does not also apply this idea to disclosing information to patients.^[5]:70 Through this text, Percival's ideas became pervasive guidelines throughout the United States as other texts were derived from them.^[5]:70

Worthington Hooker was an American physician who in 1849 published Physician and Patient.^[5]:70 This medical ethics book was radical demonstrating understanding of the AMA's guidelines and Percival's philosophy and soundly rejecting all directives that a doctor should lie to patients.^[5]:70 In Hooker's view, benevolent deception is not fair to the patient, and he lectured widely on this topic.^[5]:70 Hooker's ideas were not broadly influential.^[5]:70

Research history[link]

Historians cite a series of Human subject research experiments to trace the history of informed consent in research.

Tearoom Trade is the name of a book by American psychologist Laud Humphreys. In it he describes his research into male homosexual acts.^[10] In conducting this research he never sought consent from his research subjects and other researchers raised concerns that he violated the right to privacy for research participants.^[10]

The Milgram experiment is the name of a 1961 experiment conducted by American psychologist Stanley Milgrim. In the experiment Milgrim had an authority figure order research participants to commit a disturbing act of harming another person.^[11] After the experiment he would reveal that he had deceived the participants and that they had not hurt anyone, but the research participants were upset at the experience of having participated in the research.^[11] The experiment raised broad discussion on the ethics of recruiting participants for research without giving them full information about the nature of the research.^[11]

Medical procedures[link]

The doctrine of informed consent relates to professional negligence and establishes a breach of the duty of care owed to the patient (see duty of care, breach of the duty, and respect for persons). The doctrine of informed consent also has significant implications for medical trials of medications, devices, or procedures.

Requirements of the professional[link]

In the United Kingdom and countries such as Malaysia and Singapore, informed consent in medical procedures requires proof as to the standard of care to be expected as a recognised standard of acceptable professional practice (the Bolam Test), that is, what risks would a medical professional usually disclose in the circumstances (see Loss of right in English law). Arguably, this is "sufficient consent" rather than "informed consent."

In the United States, Australia, and Canada, a more patient-centered approach is taken and this approach is usually what is meant by the phrase "informed consent." Informed consent in these jurisdictions requires that significant risks be disclosed, as well as risks which would be of particular importance to that patient. This approach combines an objective (the reasonable patient) and subjective (this particular patient) approach.

The doctrine of informed consent should be contrasted with the general doctrine of medical consent, which applies to assault or battery. The consent standard here is only that the person understands, in general terms, the nature of and purpose of the intended intervention. As the higher standard of informed consent applies to negligence, not battery, the other elements of negligence must be made out. Significantly, causation must be shown: That had the individual been made aware of the risk he would not have proceeded with the operation (or perhaps with that surgeon).

Optimal establishment of an informed consent requires adaptation to cultural or other individual factors of the patient. For example, people from Mediterranean and Arab appear to rely more on the context of the delivery of the information, with the information being carried more by who is saying it and where, when, and how it's being said, rather than what is said, which is of relatively more importance in typical "Western" countries.^[12]

The informed consent doctrine is generally implemented through good healthcare practice: pre-operation discussions with patients and the use of medical consent forms in hospitals. However, reliance on a signed form should not undermine the basis of the doctrine in giving the patient an opportunity to weigh and respond to the risk. In one British case, a doctor performing routine surgery on a woman noticed that she had cancerous tissue in her womb. He took the initiative to remove the woman's womb; however, as she had not given informed consent for this operation, the doctor was judged by the General Medical Council to have acted negligently. The council stated that the woman should have been informed of her condition, and allowed to make her own decision.

Competency of the patient[link]

The ability to give informed consent will be governed by a general requirement of competency. In common law jurisdictions, adults are presumed competent to consent. This presumption can be rebutted, for instance, in circumstances of mental illness or other incompetence. This may be prescribed in legislation or based on a common-law standard of inability to understand the nature of the procedure. In cases of incompetent adults, a health care proxy makes medical decisions. In the absence of a proxy, the medical practitioner is expected to act in the patient's best interests until a proxy can be found.

By contrast, 'minors' (which may be defined differently in different jurisdictions) are generally presumed incompetent to consent, but depending on their age and other factors may be required to provide Informed assent. In some jurisdictions (e.g. much of the U.S.), this is a strict standard. In other jurisdictions (e.g. England, Australia, Canada), this presumption may be rebutted through proof that the minor is ‘mature’ (the ‘Gillick standard’). In cases of incompetent minors, informed consent is usually required from the parent (rather than the 'best interests standard') although a parens patriae order may apply, allowing the court to dispense with parental consent in cases of refusal.

Deception[link]

Research involving deception is controversial given the requirement for informed consent. Deception typically arises in social psychology, when researching a particular psychological process requires that investigators deceive subjects. For example, in the Milgram experiment, researchers wanted to determine the willingness of participants to obey authority figures despite their personal conscientious objections. They had authority figures demand that participants deliver what they thought was an electric shock to another researcher. For the study to be successful, it was necessary to deceive the participants so they believed that the subject was a peer and that their electric shocks caused the peer actual pain.

Nonetheless, research involving deception prevents the subject/patient from exercising his/her basic right of autonomous informed decision-making and conflicts with the ethical principle of Respect for persons.

It is stated in the Ethical Principles of Psychologists and Code of Conduct set by the American Psychological Association, that psychologists may not conduct research that includes a deceptive compartment unless the act is justified by the value and the importance of the results of such study, provided that this could not be obtained in an alternative way. Moreover, the research should bear no potential harm to the subject as an outcome of deception, be it physical pain or emotional distress. Finally, a debriefing session is required in which the experimenter discloses to the subject the use of deception in the research he/she was part of and provides the subject with the option of withdrawing his/her data.^[13]

Abortion[link]

In some U.S. States, informed consent laws (sometimes called "Right To Know" laws) require that a woman seeking an elective abortion be given factual information by the abortion provider about her legal rights, alternatives to abortion (such as adoption), available public and private assistance, and medical facts (some of which are disputed—see fetal pain), before the abortion is performed (usually 24 hours in advance of the abortion). Other countries with such laws (e.g. Germany) require that the information giver not be affiliated with the abortion provider, to avoid giving an economic incentive for handing out faulty information.^{[citation needed]}

Some informed consent laws have been criticized for allegedly using "loaded language in an apparently deliberate attempt to 'personify' the fetus,"^[14] but those critics acknowledge that abortion information provided pursuant to informed consent laws "most of the information in the materials about abortion comports with recent scientific findings and the principles of informed consent, some content is either misleading or altogether incorrect."^[15]

Vaccines[link]

Except for during clinical trials, there is no Federal requirement in the United States for providing informed consent regarding the administration of vaccines. [1]

Sex[link]

This section lacks a single coherent topic. Please help improve this section by rewording sentences or removing irrelevant information. Specific concerns may appear on the talk page. (March 2011)

This unreferenced section requires citations to ensure verifiability.

The question of whether informed consent needs to be formally given before sexual intercourse or other sexual activity, and whether this consent can be withdrawn at any time during the act, is an issue that is currently being discussed in the United States regarding rape and sexual assault legislation. For example, people who perform sexual acts on sleeping people are not given consent unless the initiator have given prior informed consent to the act within a reasonable recency,^{[citation needed]} and are assumed to be consenting during the act and to not prosecute for it when waking up. This is also an issue in rape fantasy enaction which is often discussed by a "ravishment community" of participants (a subset of the BDSM community) who advocate extensive prior negotiation and planning.

While children may be able to give consent, a more complex question applies in terms of informed consent: whether children are developmentally and otherwise able to give informed consent, in particular to an adult, bearing in mind power relationships, maturity, experience and mental development. For this and other reasons most states have an age of consent under which a child is deemed unable to give consent. As evaluation of maturity, mental maturity, child development, child communication, and child intelligence are further explored, this may be based on psychological and medical evaluation of status for sexual activity instead of chronological age.

Animals are not usually considered able to give informed consent in a legal sense, and partly for this reason, but more usually due to concerns for morality, bestiality is illegal in many jurisdictions.

No-victim laws[link]

It may not be legally possible to give consent to certain activities in certain jurisdictions; see the Operation Spanner case for an example of this in the UK which involved sadomasochistic activities such as branding. There are currently several legal challenges underway to address these issues of legality in several nations.^{[verification needed]}

Research[link]

In medical research, the Nuremberg Code set a base international standard in 1947, which continued to develop, for example in response to the ethical violation in the Tuskegee syphilis experiment. Nowadays, medical research is overseen by an ethics committee that also oversees the informed consent process.

As the medical guidelines established in the Nuremberg Code were imported into the ethical guidelines for the social sciences, informed consent became a common part of the research procedure.^[16] However, while informed consent is the default in medical settings, it is not always required in the social science. Here, research often involves low or no risk for participants, unlike in many medical experiments. Second, the mere knowledge that they participate in a study can cause people to alter their behavior, as in the Hawthorne Effect: "In the typical lab experiment, subjects enter an environment in which they are keenly aware that their behavior is being monitored, recorded, and subsequently scrutinized." ^[17] In such cases, seeking informed consent directly interferes with the ability to conduct the research, because the very act of revealing that a study is being conducted is likely to alter the behavior studied. List^[18] exemplifies the potential dilemma that can result: "if one were interested in exploring whether, and to what extent, race or gender influences the prices that buyers pay for used cars, it would be difficult to measure accurately the degree of discrimination among used car dealers who know that they are taking part in an experiment." In cases where such interference is likely, and after careful consideration, a researcher may forgo the informed consent process. This is commonly done after weighting the risk to study participants versus the benefit to society and whether participants are present in the study out of their own wish and treated fairly.^[19] Researchers often consult with an Ethics Committee or institutional review board to render a decision.

See also[link]

Footnotes[link]

1. ^ 1. Faden, R. R., & Beauchamp, T. L. (1986). A History and Theory of Informed Consent.. New York: Oxford University Press. 
2. ^ 2. Beauchamp, Tom L. and Childress, James F (1994). Principles of Biomedical Ethics. New York: Oxford University Press. 
3. ^ Council for International Organization of Medical Sciences (CIOMS) and World Health Organization (WHO) Geneva, Switzerland, 2002. "International Ethical Guidelines for Biomedical Research Involving Human Subjects". http://www.cioms.ch/publications/layout_guide2002.pdf. 
4. ^ McManus, J.; S. G. Mehta, et al. (2005). ""Informed consent and ethical issues in military medical research."". Academic Emergency Medicine 12 (11): 1120-1126. 
5. ^ ^{a b c d e f g h i j k l m n o p q r s t u v w x y z} King, Ruth R. Faden, Tom L. Beauchamp, in collaboration with Nancy M.P. (1986). A history and theory of informed consent ([Online-Ausg.]. ed.). New York: Oxford University Press. ISBN 0-19-5036867. 
6. ^ Burns, Chester R. (1977). Legacies in ethics and medicine. New York: Science History Publications. ISBN 9780882021669.  In this book see Mary Catherine Welborn's excerpts from her 1966 The long tradition: A study in fourteenth-century medical deontology
7. ^ Katz, Jay; Alexander Morgan Capron (2002). The silent world of doctor and patient (Johns Hopkins Paperbacks ed. ed.). Baltimore: Johns Hopkins University Press. pp. 7–9. ISBN 978-0801857805. 
8. ^ Burns, Chester R. (1977). Legacies in ethics and medicine. New York: Science History Publications. ISBN 9780882021669.  In this book see De Mondeville's "On the morals and ethics of medicine" from Ethics in Medicine
9. ^ Gregory, John (1772). Lectures on the Duties and Qualifications of a Physician. 
10. ^ ^{a b} Babbie, Earl (2010). The practice of social research (12th ed. ed.). Belmont, Calif: Wadsworth Cengage. ISBN 0495598410. 
11. ^ ^{a b c} Baumrind, D. (1964). "Some thoughts on ethics of research: After reading Milgram's "Behavioral Study of Obedience."". American Psychologist 19 (6): 421. DOI:10.1037/h0040128.  edit
12. ^ Too Much Information: Informed Consent in Cultural Context. By Joseph J. Fins and Pablo Rodriguez del Pozo. Medscape 07/18/2011
13. ^ 2. American Psychological Association. (2002). "2010 Amendments to the American Psychological Association ethical principles of psychologists and code of conduct.". http://www.apa.org/ethics/code/index.aspx. Retrieved April 30, 2012. 
14. ^ Gold, Rachel and Nash, Elizabeth.State Abortion Counseling Policies and the Fundamental Principles of Informed Consent, Guttmacher Policy Review, Fall 2007, Volume 10, Number 4.
15. ^ Richardson, Chinue and Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials", Guttmacher Policy Review Fall 2006, Volume 9, Number 4.
16. ^ Homan, R. (1991). The ethics of social research. London; New York: Longman.
17. ^ Levitt, S. D., & List, J. A. (2007). What Do Laboratory Experiments Measuring Social Preferences Reveal about the Real World? Journal of Economic Perspectives, 21(2), 153-174: p. 168
18. ^ List, J. A. (2008). Informed Consent in Social Science. Science, 322(5902), 672. doi:10.1126/science.322.5902.672a
19. ^ Levitt, S. D., & List, J. A. (2009). Field experiments in economics: The past, the present, and the future. European Economic Review, 53(1), 1-18. doi:10.1016/j.euroecorev.2008.12.001

Bibliography[link]

Henrietta Lacks (August 1, 1920 – October 4, 1951)^[1] (sometimes erroneously called Henrietta Lakes, Helen Lane or Helen Larson) was an African-American woman who was the unwitting source of cells (from her cancerous tumor), which were cultured by George Otto Gey to create an immortal cell line for medical research. This is now known as the HeLa cell line.^[2]

Biography[link]

Early life (1920–1940)[link]

Henrietta Lacks was born Loretta Pleasant on August 1, 1920^[1][3] in Roanoke, Virginia, to Eliza (1886–1924)^[4] and John Randall Pleasant I (1881–1969).^[5][6][7] Her family is uncertain how her name changed from Loretta to Henrietta.^[1] Eliza, her mother, died giving birth to her tenth child in 1924. Henrietta's father felt unable to handle the children, so he took them all to Clover, Virginia and distributed the children between relatives. Henrietta, nicknamed Hennie, ended up with her grandfather, Tommy Lacks.^[1]

Later life (1941–1950)[link]

Pleasant married her first cousin, David "Day" Lacks (1915–2002), in Halifax County, Virginia. David had already been living with Henrietta's grandfather when she moved there at age 4. Their marriage on April 10, 1941, after their first two children were born (the first when Henrietta was just 14), surprised many in the family as they had been raised like brother and sister.^[1]

At the end of 1941, their cousin Fred Garret convinced the Lacks couple to leave the tobacco farm and have Day work at Bethlehem Steel's Sparrow's Point steel mill. Soon, they moved—Day first, then Henrietta and their two oldest children, Lawrence and Lucile Elsie Pleasant (Elsie)—to Maryland. David bought a house for the family with the money Garret gave Day when he left to go overseas. Their house was on New Pittsburgh Avenue in Turners Station, now a part of Dundalk, Baltimore County, Maryland. This community was one of the largest^[8][9] and one of the youngest^[9] of the approximately forty African American communities in Baltimore County.

Day and Henrietta had five children together: Lawrence (b. 1935), Elsie (1939–1955), David "Sonny" Jr. (b. 1947), Deborah (1949–2009), and Joseph (b. 1950, later changed name to Zakariyya Bari Abdul Rahman). Joseph Lacks, Henrietta's last child, was born at Johns Hopkins Hospital in November 1950, just four and a half months before Henrietta was diagnosed with cancer.^[1] Elsie was described by the family as "different", "deaf and dumb" and in 1955 died in the Hospital for the Negro Insane (which was later renamed Crownsville Hospital Center and was also known as Crownsville State Hospital). Elsie had been placed there about 1950, around the same time Henrietta discovered that she had lumps and unusual bleeding.^[1]

Diagnosis and death (1951)[link]

On January 29, 1951, Henrietta went to Johns Hopkins Hospital because she felt a knot inside her. It all started when she asked her cousins to feel her belly, asking if they felt the lump that she did. Her cousins assumed correctly that she was pregnant. But, after giving birth to her fifth child, Joseph, Henrietta started bleeding abnormally and profusely. Her local doctor tested her for syphilis, which came back negative, and referred her to Johns Hopkins.

Johns Hopkins was their only choice for a hospital, since it was the only one in proximity to them that treated black patients. Howard Jones, her new doctor, examined Henrietta and the lump in her cervix. It was nothing he had ever seen before. He cut off a small part of the tumor and sent it to the pathology lab. Soon after, Jones discovered she had a malignant epidermoid carcinoma of the cervix Stage 1 (cervical cancer).

Lacks was treated with radium tube inserts, which were sewn in place. After several days in place, the tubes were removed and she was released from Johns Hopkins with instructions to return for X-ray treatments as a follow-up. During her radiation treatments for the tumor, two samples of Henrietta's cervix were removed— a healthy part and a cancerous part— without her permission.^[10] The cells from her cervix were given to Dr. George Otto Gey. These cells would eventually become the HeLa immortal cell line, a commonly used cell line in biomedical research.^[1]

Lacks returned for the X-ray treatments. However, her condition worsened and the Hopkins doctors treated her with antibiotics, thinking that her problem might be complicated by an underlying venereal disease (she had neurosyphilis and presented with acute gonorrhea at one point as well).^{[citation needed]}

In significant pain and without improvement, Lacks returned to Hopkins on August 8th for a treatment session but asked to be admitted. She remained at the hospital until her death.^[1] Though she received treatment and blood transfusions, she died of uremic poisoning on October 4, 1951, at 12:30 A.M. at the age of thirty-one.^[11] A subsequent partial autopsy showed that the cancer had metastasized throughout her body.^[1]

Henrietta Lacks was buried without a tombstone in a family cemetery in Lackstown, a part of Clover in Halifax County, Virginia. Her exact burial location is not known, although the family believes it is within feet of her mother's gravesite.^[1] Lackstown is the name of the land that has been held by the (black) Lacks family since they received it from the (white) Lacks family, who had owned the ancestors of the black Lackses when slavery was legal. Many members of the black Lacks family were also descended from the white Lacks family. A row of boxwoods separates the graves of whites from those of the blacks buried in the family cemetery.^[1] For decades, Henrietta Lacks' mother has had the only tombstone of the five graves in the family cemetery in Lackstown.^[11][12]

Legacy[link]

In scientific research[link]

The cells from Henrietta's tumor were given to researcher George Gey, who "discovered that [Henrietta's] cells did something they'd never seen before: They could be kept alive and grow."^[13] Before this, cells cultured from other cells would only survive for a few days. Scientists spent more time trying to keep the cells alive than performing actual research on the cells but some cells from Lacks's tumor sample behaved differently than others. George Gey was able to isolate one specific cell, multiply it, and start a cell line. Gey named the sample HeLa, after the initial letters of Henrietta Lacks' name. As the first human cells grown in a lab that were "immortal" (they do not die after a few cell divisions), they could be used for conducting many experiments. This represented an enormous boon to medical and biological research.^[1]

As reporter Michael Rogers stated, the growth of HeLa by a researcher at the hospital helped answer the demands of the 10,000 who marched for a cure to polio shortly before Lacks' death. By 1954, the HeLa strain of cells was being used by Jonas Salk to develop a vaccine for polio.^[1][11] To test Salk's new vaccine, the cells were quickly put into mass production in the first-ever cell production factory.^[14]

Demand for the HeLa cells quickly grew. Since they were put into mass production, Henrietta's cells have been mailed to scientists around the globe for "research into cancer, AIDS, the effects of radiation and toxic substances, gene mapping, and countless other scientific pursuits".^[11] HeLa cells have been used to test human sensitivity to tape, glue, cosmetics, and many other products.^[1] Scientists have grown some 20 tons of her cells.^[1][15] and there are almost 11,000 patents involving HeLa cells.^[1]

In the early 1970s, the family started getting calls from researchers who wanted blood samples from them to learn the family's genetics (eye colours, hair colours, and genetic connections). The family wondered why and this is when they learned about the removal of Henrietta's cells.^[1]

Recognition[link]

In 1996, Morehouse School of Medicine in Atlanta, the state of Georgia and the mayor of Atlanta recognized the late Henrietta Lacks' family for her posthumous contributions to medicine and health research.^[16]

Her life was commemorated annually by Turners Station residents for a few years after Morehouse's commemoration. A congressional resolution in her honor was presented by Robert Ehrlich following soon after the first commemoration of her, her family, and her contributions to science in Turners Station.

Events in the Turners Station's community have also commemorated the contributions of others including Mary Kubicek, the laboratory assistant who discovered that HeLa cells lived outside the body, as well as Dr. Gey and his nurse wife, Margaret Gey, who together after over 20 years of attempts were eventually able to grow human cells outside of the body.^[1]

In 2011, Morgan State University granted her a posthumous honorary degree.^[17]

On September 14, 2011, the Board of Directors of Washington ESD 114 Evergreen School District chose to name a new health and bioscience high school in her honor. The new school, scheduled to open in the fall of 2013, will be named Henrietta Lacks Health and Bioscience High School.^[18] "It is such an honor to name our new school after a person who so impacted the world of medicine and science," said school board member Victoria Bradford, who also served on the naming committee. "It is also a privilege to be the first organization to publicly memorialize Henrietta Lacks by naming this school building after her."^[19]

In media[link]

In 1998, Modern Times: The Way of All Flesh, a one-hour BBC documentary on Lacks and HeLa directed by Adam Curtis, won the Best Science and Nature Documentary at the San Francisco International Film Festival. Immediately following the film's airing in 1997, an article on HeLa cells, Lacks, and her family was published by reporter Jacques Kelly in The Baltimore Sun. In the 1990s, the Dundalk Eagle published the first article on her in a newspaper in Baltimore City and Baltimore County, and it continues to announce upcoming local commemorative activities. The Lacks family was also honored at the Smithsonian Institution.^[20] In 2001, it was announced that the National Foundation for Cancer Research would be honoring "the late Henrietta Lacks for the contributions made to cancer research and modern medicine" on September 14. Because of the events of September 11, 2001, the event was canceled.^[21]

In 2000^[22] Mal Webb released a CD with a song about Lacks called Helen Lane.^[23]

In her 2010 book, The Immortal Life of Henrietta Lacks, Rebecca Skloot documents the histories of both the HeLa cell line and the Lacks family. Henrietta's husband, David Lacks, was told little following her death. Suspicions fueled by racial issues prevalent in the South were compounded by issues of class and education. For their part, members of the Lacks family were kept in the dark about the existence of the tissue line. When its existence was revealed in two articles written in March 1976 by Michael Rogers, one in the Detroit Free Press^[24] and one in Rolling Stone,^[1][25] family members were confused about how Henrietta's cells could have been taken without consent and how they could still be alive 25 years after her death.^[20]

In May 2010, The Virginian-Pilot published two articles on Lacks, HeLa, and her family,^[1][26] which mentions that the Morehouse School of Medicine has donated the money for Henrietta's grave as well as her daughter Elsie, who died in 1955, to finally have headstones. Her grandchildren wrote her epitaph: "Henrietta Lacks August 01, 1920 – October 04, 1951 In loving memory of a phenomenal woman, wife and mother who touched the lives of many. Here lies Henrietta Lacks (HeLa). Her immortal cells will continue to help mankind forever. Eternal Love and Admiration, From Your Family"^[1][26]

In May 2010, HBO announced that Oprah Winfrey and Alan Ball would develop a film project based on Skloot's book.^[26]

On May 17, 2010, NBC ran a fictionalized version of Lacks' story on Law & Order, titled "Immortal". An article in Slate called the episode "shockingly close to the true story."^[27]

On May 31, 2011 Jello Biafra and the Guantanamo School of Medicine released the CD Enhanced Methods of Questioning with a song about Henrietta Lacks and the HeLa immortal cell line called "The Cells That Will Not Die".

Notes[link]

References[link]

Further reading[link]

• Russell Brown and James H M Henderson, 1983, "The Mass Production and Distribution of HeLa Cells at Tuskegee Institute", 1953–1955. J Hist Med allied Sci 38(4):415–43
• Michael Gold, A Conspiracy of Cells, 1986, State University of New York Press
• Hannah Landecker 2000 "Immortality, In Vitro. A History of the HeLa Cell Line". In Brodwin, Paul E., ed.: Biotechnology and Culture. Bodies, Anxieties, Ethics. Bloomington/Indianapolis, 53–72, ISBN 0-253-21428-9
• Hannah Landecker, 1999, "Between Beneficence and Chattel: The Human Biological in Law and Science," Science in Context, 203–225.
• Hannah Landecker, 2007, Culturing Life: How Cells Became Technologies. "HeLa" is the title of the fourth chapter.

External links[link]

• The Henrietta Lacks Foundation, a foundation established to, among other things, help provide scholarship funds and health insurance to Henrietta Lacks's family.
• February 2010 CBS Sunday Morning Segment, "The Immortal Henrietta Lacks," featuring the Lacks Family
• Slate: "Immortal: Ripped From Which Headline," story about Law and Order episode based on Henrietta Lacks
• RadioLab segment, "Henrietta's Tumor," featuring Deborah Lacks.
• January 2010 Smithsonian magazine article
• Jones Institute for Reproductive Medicine
• Photographs from "Henrietta Lacks' 'Immortal' Cells" by Smithsonian.com
• Surprising Science: “Fair” Use of our Cells by Sarah Zielinski, February 2, 2010, SmithsonianMag.com blog
• Wired Magazine 2010 article with timeline of HeLa
• The Way Of All Flesh — Documentary by Adam Curtis
• Audio Interview with Rebecca Skloot about her book "The Immortal Life of Henrietta Lacks"
• Tavis Smiley interview with Rebecca Skloot about The Immortal Life of Henrietta Lacks
• The Immortal Life of Henrietta Lacks book website with additional features (photo/video/audio)
• New York Times review of Rebecca Skloot's book on Henrietta
• Life of Henrietta Lacks
• Family Talks about Dead Mother Whose Cells fight Cancer (Jet Magazine – April 1, 1976)
• 25 Years after Death, Black Mother's Cells Live for Cancer Study (Jet Magazine – April 1, 1976)
• Helen Lane, a song by Mal Webb