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Ethics of genetic testing
Ethics of genetic testing
Ethics of genetic testing
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Many debates arise upon the decision of if/when a physician should provide informed consent. Some argue that constant informed consent can become a “burden,” but how does a patient getting operated on verify that when there is a mishap in the procedure, the physician holds responsibility, when the patient lacks knowledge of the original procedure? They can't. The Immortal Life of a Henrietta Lacks can prove the inequality that resulted from lack of informed consent. Physicians robbed Henrietta Lacks of her own cells without her knowledge, which later lead to the making of millions of dollars, while her family upheld complete unawareness of the situation. Ideally, physicians and researchers would obtain informed consent, allowing Henrietta and …show more content…
The idea of informed consent “originates from the legal and ethical right the patient has,” involving morals, ethics, and knowledge to compose an informed decision on what will happen to the patient’s body (Bord). Henrietta Lacks experienced multiple miscommunications relating to her cancer and the operations performed on her body. For instance, Henrietta believed that she would have another child following the completion of treatment. She asked her doctor about an appropriate time to have another child and “until that moment, Henrietta didn’t know that the treatments had left her infertile.” (Lacks 47) Henrietta’s doctors had failed to notify her that she would no longer possess the ability to conceive children, leaving Henrietta with regret that she did not sustain any knowledge on the procedures operated on her. Informed consent has a purpose to “provide sufficient information to a potential participant” so that the potential participant can assemble a decision regarding whether or not they want to undergo the procedure (Nijhawan et al 134). Lack of informed consent/communication can lead to a patient wrongfully establishing a decision that goes against their morals. Therefore, informed consent includes a sufficient way of providing a potential patient with knowledgeable information …show more content…
For example, a patient’s cells put to research without the patient’s knowledge increases the probability of the leaking of private information and exposure. Henrietta Lacks experienced a similar issue. Henrietta did not receive informed consent, which lead to the use of her cells for research in multiple laboratories without her knowledge. Private organizations used her cells to make millions of dollars; meanwhile, her family suffers from poverty. The notion of unjust services provided by physicians arise from the fact that “tissues from millions of Americans are used in research without their knowledge,” which completely invades the patient’s privacy and personal rights (Skloot). When a physician does not obey to the patient’s disapproval of the performance of a procedure, the physician “may be subject to medical malpractice litigation, removal from preferred-provider lists, or the loss of hospital privileges,” to ensure the patient’s protection (Murray). Providing the patient with liable information regarding the procedure keeps both the physician and the patient
American Medical Int’l, Inc. According to this theory, individuals’ decisions are guided by what they are supposed to do, not by consequences or effects. That is to say, a person’s action is ethically right if it coincides with a prevailing moral duty (“Deontological Ethics,” 2007). In the dilemma involving the patient Riser, Dr. Lang violated the theory of deontological ethics by not performing his duty of acquiring informed consent from the patient. By standard of conduct, Dr. Lang was supposed to present a consent form to Riser prior to the operation that would explain the procedure of a femoral arteriogram (although it was supposed to be bilateral arteriograms instead) and thoroughly explain the possible benefits and risks of the procedure. As a result, the patient should have the right to decide whether the femoral arteriogram should be performed or not. However, Riser was not aware of the femoral arteriogram at all. Therefore, deontological ethics should have been followed, which would advise Dr. Lang to follow the ethical duties of a healthcare professional, and those include obtaining informed consent from the
Autonomy is a concept found in moral, political, and bioethical reasoning. Inside these connections, it is the limit of a sound individual to make an educated, unpressured decision. Patient autonomy can conflict with clinician autonomy and, in such a clash of values, it is not obvious which should prevail. (Lantos, Matlock & Wendler, 2011). In order to gain informed consent, a patient
Dr. TeLinde and Dr. Gey were collecting samples for reasons that could potentially bring large benefit to society, but they did not consider how the individuals who provided the sample would directly benefit. In the case of Henrietta her tissue sample ultimately led to major medical advances, but due to the fact that when the sample was taken the researchers did not give forethought to the benefits and risks that might occur; therefore, Henrietta and her family were exposed to severe loss of privacy and did not receive any form of benefits from the widespread use of her cell line. The Belmont Report (1979) states how relevant risks and benefits must be thoroughly outlined in the documents used in the informed consent process. The research was not well designed in the assessment of risks and benefits component and did not consider this
Without them, we would be decades behind because the average person would not find signing away a piece of their body acceptable. Skloot brings up a case where a man sues a scientist for doing research on his removed spleen without his consent. The author states that those in favor of research said it “…would ‘create chaos for reseachers’ and ‘[sound] the death kneel to the university physician-scientist’. They called it ‘a threat to the sharing of tissue for research purposes,’ and worried that patients would block the progress of science by holding out for excessive profits, even with cells that weren’t worth millions…” (203). The concern shown from the quote was that with extensive limitations on research and tight ethical codes, the information found would be inadequate at best. On one hand, you do need to be honest with the patient, but for the cost of so many lives, there needs to be a balance of creating breakthroughs and appeasing those who matter in the situation. In regards to Henrietta, she did sign a document to have any medical procedure done that was deemed necessary by her doctors. With that being said, she did unknowingly give away some of her rights as a
According to Terrence F. Ackerman, as of the 1980s the American Medical Association had to include the respect for a person’s autonomy as a principle of medical ethics (Ackerman 14, 1982). This includes having the physician provide all the medical information to the patient even if the information could cause negative implication onto the patient. The physician is also expected to withhold all information of the patient from 3rd parties (Ackerman 14, 1982). Although it is seen as standard in today’s world, in
Bioethics is the use of morals in science. If there had been more bioethics in Henrietta Lacks’s case, her doctors may have used their morals to not take the cells from her body without her permission or at least let her family know they had. Sixteen years before her case, the Nuremberg Code had been created which stated 10 codes of ethics to be used during human experimentation. However, it was not a law and few doctors even knew it existed.The issue of informed consent was also brought up in 1957 but doctors testified it was unnecessary. However on June 30th, 1974,17 years later, a law was passed requiring informed consent for all federally funded research. The issue of bioethics affected HeLa and many began to doubt if the doctors at Johns Hopkins had really been ethical. In conclusion, Henrietta Lacks and her “immortal” cells helped the field of science and its future
Henrietta Lacks was a thirty-year-old black woman who lived on a farm, as a tobacco farmer in southern Virginia. She was born in 1920, as Loretta Pleasant, she lived in a house in Roanoke, Virginia with her parents and her eight older siblings. That all changed when her mother died during childbirth and the father couldn’t take care of them, Henrietta was sent to live with her grandfather Tommy Lacks on his farm with her cousin David Lacks. Henrietta Lacks and Day were close with each other, they even had children. As they got older Day went to work leaving Henrietta and the kids behind to make enough money for a house,
In looking at these instances, the doctors seemed to have thought their actions normal. They thought that since they were treating the patient they automatically had access to their cells, tissues, DNA, that they could take without permission and use to develop science or to even become rich and famous like Dr. Golde tried to do. One might say that no matter how useful a person's biological property can be to western medicine and science, it does not excuse the violation of privacy of a patient. Ostensibly, there is no need to worry about a patient saying no if the doctor has moral and beneficial intentions for the use of a patient's private, biological
Providers must act in the best interest of the patient and their basic obligation is to do no harm and work for the public’s wellbeing. A physician shall always keep in mind the obligation of preserving human life. Providers must communicate full, accurate and unbiased information so patients can make informed decisions about their health care. As a result of their recommendations, providers are responsible for generating costs in health care but do not generate the need for those expenses. Every hospital has both an ethical as well as a legal responsibility to provide care, even if the care may be uncompensated.
Consent is an issue of concern for all healthcare professional when coming in contact with patients either in a care environment or at their home. Consent must be given voluntary or freely, informed and the individual has the capacity to give or make decisions without fear or fraud (Mental Capacity Act, 2005 cited in NHS choice, 2010). The Mental Capacity Act perceives every adult competent unless proven otherwise as in the case of Freeman V Home Office, a prisoner who was injected by a doctor without consent because of behavioural disorder (Dimond, 2011). Consent serves as an agreement between the nurse and the patient, and allows any examination or treatment to be administered. Nevertheless, consent must be obtained in every occurrence of care as in the case of Mohr V William 1905 (Griffith and Tengrah, 2011), where a surgeon obtain consent to perform a procedure on a patient right ear. The surgeon found defect in the left ear of the patient and repaired it assuming he had obtained consent for both ear. The patient sued him and the court found the surgeon guilty of trespassing. Although there is no legal requirement that states how consent should be given, however, there are various ways a person in care of a nurse may give consent. This could be formal (written) form of consent or implied (oral or gesture) consent. An implied consent may be sufficient for taking observation or examination of patient, while written is more suitable for invasive procedure such as surgical operation (Dimond, 2011).
The medical Profession recognizes that patients have a number of basic rights. These include but are not limited to the following: the right to reasonable response to his or her requests and need and needs for treatment within the hospital's capacity. The right to considerate, respectful care focused on the patient's individual needs. The right of the patient to make health care decisions, including the right to refuse treatment. The right to formulate advance directives. The right to be provided with information regarding treatment that enables the patient to make treatment decisions that reflect his or her wishes. The right to be provided upon admission to a health care facility with information about the health care provider's policies regarding advance directives, patient rights, and patient complaints. The right to participate in ethical decision making that may arise in the course of treatment. The right to be notified of any medical research or educational projects that may affect the patient's care. The right to privacy and confid...
Informed consent has been preserved as a sacred value since medicine started caring for the sick and it is still upheld today as a critical component of clinical research. Ensuring voluntary participation through an informed decision-making process in clinical research continues to be an ethical and moral obligation of the study team, quite often the study nurses. Over time these forms have reached a degree of unreasonableness; exceeding twenty pages, being too complex, and readability that exceeds the targeted populations. A deluge of literature over the past decade reaffirms and begs for change. In 2011, the federal government agency, Office of Human Research Protections, has responded by publishing and receiving comments on an Advanced Notice of Proposed Rule-Making (ANPRM); however, there has been no further public information of action. This brief aims to provide an overview of the issues, background, as well as several possible ways to lobby for action.
In today’s society with the blogs, the gossip sites and the other forms of social media, confidentiality is a thing of the past. However, for, physicians and other health professionals, they are held to a higher standard to maintain a level of ethics and confidentiality for their patients. Confidentiality is a major duty for a health professional, but is there ever a time to where it is okay to tell what a patient says in confident? What if the patient is a minor, or a senior citizen or someone who is mentally challenged? What if a patient is being abused or wants to commit suicide? Does it matter if it is a nurse, or a dentist, or a psychologist or is all medical professional held to the same moral standard? What roles does a consent form or Health Insurance Portability and Accountability Act plays in the medical world in being confidentiality? I would like to explore Confidentiality and the moral effects it has on the health profession.
Informed consent is a very serious decision a patient has to make when it comes to their health and consenting to procedures that are believed to cure or treat their current health status. It is important to address the effectiveness of the role a physician play in the informed consent process assuring that the patient has given truly informed consent and what safeguards can be put in place to assure the patient is exercising informed consent. Informed consent is based on the fact that the person consenting is a rational individual that is aware of the action to which he/she is consenting. Allen and McNamara (2011) notes that "On the standard understanding, the important elements of informed consent are the provision of information, the voluntariness of the choice and the competence of the chooser to make the choice— so the potential research participant should be provided with information relevant to the decision to participate, they should be able to choose freely about their participation and they should be competent to decide.
...ns. Patients should not be so medically ill that they are unable to make this decision. Patients should be fully conscious and understand the implications of their decision. Everything should be documented possibly even videotaped that way the doctor doesn’t lose their job, receive a lawsuit or worst jail!