Genomic Information Into Health-Related Practice

| Given a situation related to reproductive genetics, genetic research, or the human genome project, develop a set of legal and ethical guidelines, which can be applied to genetic issues for the conduct of medical practice and/or research.

One field of genetic science which is crucial in society today is medicine where cloning is now possible. The need for moral reasoning is essential in this field because with greater power society must “[recognize] not only the limits of our knowledge but also our vulnerability to being misguided” with an evolving world (Dalai Lama 140). Humans have kept high moral responsibilities over the century when faced with new developments in knowledge. The Dalai Lama suggests that “our technological capacity has reached a critical point” during the past decade and the gap between knowledge and human ethics when making decisions has grown farther apart as new biogenetic science has arose (133). The issue is not whether

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.

Although the intentions of genetically modifying DNA in human embryos is aimed to rid society of genetic defects, it is still essential that this scientific discovery remains ethical. In an article on NPR.org, Rob Stein describes an experiment that scientists have been conducting in which they modify human DNA in order to eliminate life threatening genetic diseases that could be passed on for generations (Stein). In Portland, at Oregon Health & Science University, Paula Amato, an associate professor of obstetrics and gynecology, explains “that their work is aimed at preventing terrible diseases, not creating genetically enhanced people...much more research is needed to confirm the technique is safe and effective before anyone tries to make a baby this way”(Stein). Because scientists like Amato realize their research is controversial, they are taking every precaution to assure what they are doing is morally correct, they are not intending to corrupt society. Although their intentions are good, it is their job to make sure their research is being used in an ethical way. If not, millions of people, who are already obsessed with the idea of perfection, will be able to do something about

Ethics, in our society, are the moral principles that govern our behavior, dictating what is right from wrong. The specifics of ethics changes as values in our society change and evolve. This occurs in Rebecca Skloots book, The Immortal Life of Henrietta Lacks. One major reoccurring theme in the book is the lack of informed consent and autonomy. Fortunately, now there are safeguards which protect human rights in regard to health care and research. The Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, now part of the Department of Health and Human Services, created The Belmont Report, which is one such safeguard establishing principles for all human research (USDHHS, 1979). This paper will discuss the ethical issue of informed consent within The Immortal Life of Henrietta Lacks, the disregard to parts of the Belmont Report, as well as compare the role of the nurse in charge of Henrietta’s care versus the standards of care set for modern nurses.

The example of Paul Gelsinger from Ricki Lewis’ The Forever Fix: Gene Therapy and the Boy Who Saved It (2012) shows how a parent’s desire to help a sick child can be misguided, even though their intentions are good. Situations like Paul Gelsinger’s are important to reference when discussing human research ethics because it illustrates how ethics of care can cloud rationale or hinder thorough investigation of treatment for children. Paul’s son, Jesse Gelsinger, was a teenager who suffered from a genetic disorder called Ornithine transcarbamylase deficiency also known as OTC deficiency. The disease affects the liver; individuals cannot metabolize ammonia, leading to elevated levels of the compound in the blood which can harm nervous tissue in

The main ethical issues that presented in the case scenario is maintaining privacy and confidentiality. “Privacy is limited access to a person, the person’s body, conversations, bodily functions or objects immediately associated with the person” (CNO, 2009, p. 7). Nurses recognize the importance

The last 150 years have seen the origin of—and rapid expansion in—human knowledge involving the nature and mechanisms of trait and disease inheritance in human beings. Advances in genetic research hold great promise for the future development of effective prevention and treatment strategies for a great many, often devastating, heritable conditions. However, these advances also raise a series of policy, legal and fundamentally ethical questions concerning what we should and should not do with the knowledge and technology we acquire. These questions are numerous and both imminently practical and speculative, ranging from the exhausted, yet still largely unresolved, question of the moral status of the human embryo to fears about slippery slopes into a Brave New World or Gattaca-style dystopic future characterized by designer children and a genetic underclass.

Ethics is part of the decision making process that a nurse uses and is a foundation of nursing. Nursing needs ethical standards to rely on in order to provide quality care for patients and to keep them from harm while respecting their wishes (da Silva Santos, Cartaxo, & Buriti 2016). Ethics is defined as a guide, or a code, that given populations use to model behaviors (Finkelman & Kenner 2016). When referring to the nursing profession, ethics are the driving factor when considering what is right and wrong. The goal of ethics in nursing is to provide a means to support the decision making process of the patient. Nursing informatics will be specifically discussed as a resource for the purposes of this paper. Only peer-reviewed articles from professional journals were reviewed. The ethical dilemmas the author will present surround the use of informatics in technology and how they now arise in the medical profession, with nursing in particular. The nursing code of ethics addresses the issues of patient rights. The nursing code of ethics challenges the nurse to provide complete and accurate information in order to facilitate informed consent, while weighing the benefits, responsibilities, and options for treatment (ANA

1. Why is there the need for ethics in research? Discuss the ethical guidelines for nurses in the USA? Scientifics confront ethical dilemmas while conducting research frequently.

Over 50 years ago, the first code of ethics was implemented by the American Nurses Association (ANA), and over time, this code has been revised to encompass its current nine doctrines CITATION Ame151 \l 1033 (American Nurses Association, 2015). Although the code has undergone several modifications, the basic tenet is for nurses to “do no harm.” Genomics and current legislative privacy protocols place nurses in a position to potentially do unintentional harm. The purpose of this paper is to determine whether nurses have an ethical duty to maintain patient privacy regarding genetic test results that can prevent potential harm to others.

As I stated before, Nurses will have a critical role in advocating for the patient, educating, counseling, and supporting patients and families who are making gene-based healthcare decisions (Cassells, Jenkins, Lea, Calzone, & Johnson, 2003). But it does raise a question of intentions. In some of the articles, I learned valuable information about the process of the Genome project for instance. Some characteristics are reputable and futuristically enlightening. But on the other hand, I see the project as a means of profiting in the form of the patient. As a nurse I’m the first line to trust from the patient, what better method to get consent to their genetic Intel. We as nurses have a relationship built on

If researchers and institutions have complete control over cells once extracted, then research and understanding of medicine, pharmacodynamics, pharmacokinetics, metabolism, and genetic markers can significantly advance. Currently, courts have favored this course of action, as demonstrated in Moore v. Regents of the University of California. Additionally, there are no property rights in corpuses (Yang, Y et al 2011). This advocates for the continuation for the asymmetrical power given towards researchers and large biotech companies. This would benefit researchers, large research institutions and their contributors, and pharmaceutical companies while discriminating the patient’s right to know what occurs to their genetic information, the most personal aspect that makes them human. The consequence

Therefore, nurses play an important role, the need to support the patient and family advocacy, counseling, education and gene-based medical decisions. Nurse increasingly involved in the genetic testing process for screening, diagnosis, and treatment of the genomic-based health. Nurses are also involved in the administration of gene therapy-based health care plan created, based on genomic information. The challenge is to make sure that the nursing skills to provide nursing personnel ready and genetic and gene therapy. As a first step, in relation to genomics and genetics nurse may need to review their ethical beliefs and issues. Nurse is required to establish an ethical assessment system to support the appropriate gene and the genomic medical their delivery. Created by a nurse of the essential competencies in genetics and genomics will provide a basis to support the expanding role of genetic and genomic health care around the world. Nurses are encouraged to work toward integrating these capabilities into nursing education, medical research worldwide (Lea,

The Human Genome Project launched in 1990 and marked the start of an evolutionary change in healthcare. Medicine has made great advancements following the completion of the Human Genome Project (HGP) in 2003. In addition to these advancements, the scope of practice for nurses’ is continuously changing and expanding. There is a growing emphasis on genetic literacy in the nursing profession. In the era of personalized medicine, registered nurses are now expected to be knowledgeable and skilled in genetics and genomics, regardless of academic preparation. The American Nurses Association (ANA) and the International Society of Nursing Genetics (ISONG) have published collaborative resources defining