ETHICAL CONSIDERATION It can be argued that patients using a healthcare system have an ethical duty to help with quality assurance activities that ultimately aim to protect them and their fellow man (Wade, 2007). This point of view also applies to contributing data towards national epidemiological studies such as those run by Public Health England that utilise population-wide databases, because they, as well as the general populous, will benefit from such activities (Lynn, 2007). Public health research does provide valuable guidance and direction to healthcare for the masses. It is truly population-based health research and makes highly effective use of health data (Jamrozik, 2004). Many public health strategies involve the accumulation and …show more content…
As such, these nation-wide schemes are considered ethically justified, as they benefit the health of the population as a whole. They are often used to underpin health education initiatives and aid future healthcare planning. For example, the current rise in obesity and related health issues is monitored via analysis of national data. This has led to increased funding for improving people’s lifestyles and diets, plus an effort to introduce legislation with regards to food labelling and advertising (Roberts & Marvin, 2011). However, it should be noted that the incorporation of a patient’s data into such large data sets usually occurs without their knowledge or consent. This does raise significant ethical dilemmas and the researchers and data gatherers have a duty to ensure that their research is valid, justified and ethically sound. Typically the data is anonymous, but there often exists the possibility to trace it to the originating patient (Sorensen, Sabroe, Olsen, 1996). Yet, this storage and use of people’s data without their knowledge is ethically justified as there is little risk to the individuals involved and it has the potential to benefit the …show more content…
The research project itself must be ethical; that is, it must be well designed and capable of satisfactorily answering the research question, properly funded, and the benefits of the research must clearly outweigh the risks and burden to the participants (Wade, 2007). Yet, it is also true that the public can view the advances in the electronic capture and sharing of health data as highly beneficial. Proof of this can be seen in the positive response to schemes such as the open publication of clinical research results and the pressure being applied on commercial companies to make their clinical trials even more transparent (Lynn, 2004). Large projects such as The Human Genome project are an example of projects that demonstrate a high degree of openness on a global scale, are welcomed by the public and, at the same time, contain highly sensitive personal data (Tambor et al., 2002). Furthermore, in their survey of the British public, Barrett et al. (2006) found that most people do not consider the use of personal, identifiable data by the National Cancer Registry to be an invasion of their privacy, and therefore support its
...). Privacy and Health Information Technology. Journal of Law Medicine, 37(2), 121-149. Retrieved January 28, 2011 from CINAHL database
Why is it so important that healthcare executives adhere to a professional code of ethics?
During the process of research, professionals collect data or identifiable private information through intervention or interaction. While this is a vital part of the scientific and medical fields, every precaution must be taken by researchers to protect the participants' rights. Ethics, outlined by the Belmont report; requirements, described by the Department of Health and Human Services (DHHS); and regulations, laid out by the Food and Drug Administration (FDA) are verified by an Institutional Review Board (IRB). This procedure assures that all human rights are safeguarded during the entire research process.
Researchers who conduct interventional clinical research have put into question the Privacy Rule and how it will affect their research activities. The Department of Health and Human Services, Food and Drug Administration and Protection of Human Subjects Regulations are advised to take measures to protect the
“Public health is controversial because, depending upon how it is defined, it may challenge people’s values and demand sacrifices” (Schnieder 2017: 23). Although the overall goal is to create a policy that is inclusive of every group, this is almost impossible. It is impossible because there are too many conflicting views between each group. Public policy may also have a positive or a negative impact on the economy. One of the major conflict with public health policy is that it may be guided by religious beliefs. For example, issues such as AIDS, other sexual transmitted disease, teenage pregnancy, and low birth rates (20) are some of the major issues that end up being controversial when it comes to religion.
The four major ethical principles in health care are: Autonomy – to honor the patient’s right to make their own decision (the opposite is paternalism - the health care provider knows best for the patient), Beneficence – to help the patient advance his/her own good, Nonmaleficence – to do no harm (many bioethical controversies involves this principle), and Justice – to be fair and treat like cases alike. All 4 principles are considered to be in effect at all times. In theory, each is of equal weight or importance. Ethical responsibilities in a given situation depend in part on the nature of the decision and in part on the roles everyone involved play.
Protecting Personal Health Information in Research: Understanding the HIPAA Privacy Rule, NIH Publication Number 03-5388. Retrieved November 12, 2011 from http://privacyruleandresearch.nih.gov/pr_02.asp
Introduction: Health information is regarded as one of the most sensitive types of personal information. For this reason, the Privacy Act 1988 provides extra protections around its handling. For example, a counselling organisation generally needs a client’s consent before they can collect their health information. The Privacy Act regulates how organisations collect and handle personal information, including health information. It also includes provisions that generally allow a person to access information held about them.
Physician-assisted suicide refers to the physician acting indirectly in the death of the patient -- providing the means for death. The ethics of PAS is a continually debated topic. The range of arguments in support and opposition of PAS are vast. Justice, compassion, the moral irrelevance of the difference between killing and letting die, individual liberty are many arguments for PAS. The distinction between killing and letting die, sanctity of life, "do no harm" principle of medicine, and the potential for abuse are some of the arguments in favor of making PAS illegal. However, self-determination, and ultimately respect for autonomy are relied on heavily as principle arguments in the PAS issue.
The genetic technology revolution has proved to be both a blessing and a blight. The Human Genome Project is aimed at mapping and sequencing the entire human genome. DNA chips are loaded with information about human genes. The chip reveals specific information about the individuals’ health and genetic makeup (Richmond & Germov 2009).The technology has been described as a milestone by many in that it facilitates research, screening, and treatment of genetic conditions. However, there have been fears that the technology permits a reduction in privacy when the information is disclosed. Many argue that genetic information can also be used unfairly to discriminate against or stigmatize individuals (Willis 2009).
The Human Genome Project is the largest scientific endeavor undertaken since the Manhattan Project, and, as with the Manhattan Project, the completion of the Human Genome Project has brought to surface many moral and ethical issues concerning the use of the knowledge gained from the project. Although genetic tests for certain diseases have been available for 15 years (Ridley, 1999), the completion of the Human Genome Project will certainly lead to an exponential increase in the number of genetic tests available. Therefore, before genetic testing becomes a routine part of a visit to a doctor's office, the two main questions at the heart of the controversy surrounding genetic testing must be addressed: When should genetic testing be used? And who should have access to the results of genetic tests? As I intend to show, genetic tests should only be used for treatable diseases, and individuals should have the freedom to decide who has access to their test results.
For example, the IRB demands that a subject’s information is kept secret and private. However, the Federal government contradicts this statement by stating that ‘when appropriate,’ the researcher can reveal the participants' information. Certain research also requires the participants to know the results; according to the community-based participatory research (CBPR), the subject has the right to fully access information regarding their communities, homes, and bodies (Brown et al., 2010). If the participant wants the information to be publicly revealed, then the IRB has no reason to restrict its release. Nonetheless, some information can harm the subject psychologically, especially if the information reveals certain health problems about the subject, which do not have any clinical significance or if there are no appropriate means of treating the health problem (Brown et al., 2010).
Looking beyond the Nuremberg Code and applying it to modern medical research ethics, there are many challenges that it poses. Many have argued that the Code tries to provide for all unforeseen events, which restricts the researcher by requiring him to anticipate every situation, demanding the impossible. The most important contribution of the Code is the first principle, which says that voluntary consent of the human subject is absolutely essential. The subject involved should have legal capacity to give consent, should have free power of choice, as well as sufficient knowledge and comprehension of the experiment. This restricts that populations upon which some experiment may be conducted, since many do not have “legal capacity”. For instance, studies of mental illness and children’s diseases have been curtailed because neither of these populations has the legal capacity to give consent. Another group of people, prisoners, are never really able to give voluntary consent since they might be enticed by financial rewards, special treatment, and the hope of early release in exchange for participating in the human experimentation projects. British biostatitcian Sir Austin Bradford Hill also questioned whether it was important to inform a research subject who was receiving a placebo since it does...
Health care and research are no longer two different paths, but instead because the emphasis on reducing cost and increasing quality outcomes they are converging to make a LHCS. With the introduction of LHCS’s, research and treatment will converge into a new way of managing patient data. Expansion of technology and increased patient involvement in their health care will continue to create the need to reassess what privacy and confidentiality look like to the patient, researcher, practitioner, health plan and other business
And the quantity of consumers probing for health information on the Internet is extraordinary, still the proportion of users who can actually appraise the precision and dependability of the assimilated information is very small, which represents a potential threat to general health.... ... middle of paper ... ... Duke Forum For Law & Social Change (DFLSC), 5129-147. 12.