Genetics is an evolving field in modern day science that has been drawing attention and funding in abundance. Various healthcare professionals have varying degrees of knowledge on modern day genetics and its applications. Nurses are also required to possess knowledge on genetics, as well as a good practice on ethics pertaining to genetics. However it is still not an area where everybody is comfortable to handle (American Nurses Association, 2001). Since the completion of genome project in 2003, there is a great interest towards the applications of genetic engineering technology in healthcare. Genetic screening for diseases such as diabetes mellitus, various cancers and genetically determined illnesses have opened up a new door for the early detection as well as for the prevention (American Society of Human Genetics, 1995).
- Ethical issues of genetic engineering technology and the role of nurse
- Ethical aspects of genetic screening
Most of these applications are safe and straight forward. But some applications such as chorionic villous sampling or amniocentesis for the detection of genetic problems in fetuses have given rise to ethical dilemmas (Giarelli, 2006 p.62). Once a considerably devastating genetic anomaly is detected the parents can consider an abortion, either through legal means or not. Therefore, the nurses who are in the forefront to counsel these patients play a significant role in maintaining ethics in genetic screening. Also, detection of abnormal genes such as BRCA1, which is believed to be an important cause for the development of breast cancers, can result in a lifetime depression, in some patients (Lerman, Narod, and Schulman, 1996 p.1895). Nurses have to play a crucial role in these situations to practice proper ethics to address the needs of breaking bad news. Nurses are also directly involved in genetic testing and obtaining vital information such as family history. So it is important they possess an adequate amount of knowledge regarding genetics, as well as ethical and legal issues that can come across in their professional life. Genomic National Human Genome Research Policy Roundtable Summary (2005) illustrates the power of genomic medicine to tailor the health of each patient by using the genetic data of each patient. It also highlights the possibility of identifying exact risks for developing disease and the ability to determine drug doses and the best treatment option, among others, which can be tailored to a particular patient with genetic data (Lerman, Narod, & Schulman, 1996 p. 1896). Therefore, genetic testing and knowledge in genetic ethics is a rising need for all healthcare professionals.
- Ethical concepts in healthcare professions
Moral judgment and regulations in practice formulate the unspoken ethical background of any science, and it is similar in nursing, as well. Legal issues, unlike ethical problems, are written and formulated. Therefore, the ethical issues become more difficult to deal owing to its unwritten moral facets. Healthcare is one of the most important professions, which demands the correct practice of ethics and legal matters at all times (American Nurses Association, 2001). The ethical agendas of healthcare are based on the beneficence, non-maleficence, autonomy and justice. Beneficence is doing well for the clients and nurses are expected to foresee the benefit of their clients and make efforts to bring forth the best outcome they deserve.
Non-maleficence stands for avoiding any harm that may happen to their patients. Therefore, all healthcare professionals must take care to avoid possible mishaps in the healthcare setting, and this also includes reporting suspected abuses and avoid them being subjected to further victimization (Skirton, Patch & Williams 2005 p.33). Autonomy is the right of the client. All human beings have the right of taking decisions that affect their health. Respecting their wishes after adequate information is expected from nurses, as well as all healthcare providers. Healthcare professionals may not agree with the client’s decision; yet they need to comply with it.
Justice entitles the fair treatment of all clients in the same manner. Nurses are ethically bound to treat patients with equality, and they must treat patients with equal distribution of resources. These regulations may not be that much a concern in a modern healthcare facility. However, it is not only in their daily tasks that nurses are faced with ethical dilemmas. In a battlefield, as well as in a natural disaster, the duty of nurses becomes very important, and ethical walls, such as justice, stand tall on all aforementioned occasions (Skirton, Patch & Williams 2005 p.33).
- Ethical issues encountered by nurses
Nursing is a profession that involves many patient care activities unlike many other professions involved in genetics. Therefore, the value of ethical and legal issues of genetic medicine is more pronounced in their professional lives. Nurses get to involve in screening, diagnosis, treatment, pharmacogenomics and determining lifestyle choices based on the genetic testing. Protecting and ensuring the privacy of patients as well as gathering their information without offending their self-respect is of particular importance (National Human Genome Research Institute, 2007). Then it is important to make sure that gathered data is accessed only by the parties who are in need of these details for the benefit of the patient. But some issues that involve family conflicts may be better managed with a legal eye rather than ethical for the safety of nursing professionals (National Human Genome Research Institute, 2007).
- Ethical dilemmas
Job applicants may need to undergo genetic screening, in some instances, and the ability to discriminate between the demand and the need of each person can help to resolve these ethical issues. However some problems that arise with genetic screening may need a deep consideration. For example, some of the rare genetic disorders are now easily diagnose with genetic screening. But the population of such disease sufferers is very little and developing a treatment has become difficult due to inability to accumulate enough funding (Skirton, Patch & Williams 2005 p.33). Therefore, detecting these diseases remains a way to label a patient with a certain incurable genetic disease, and keeping him or her in the psychological instability for years. Impact of genetic information on individuals as well as on community can give birth to various problems. Some of the diseases or uncommon conditions may not be a threat to patient’s life. But it can impair the quality of patient’s life considerably. For example, the absence of P53 gene can go unnoticed in many people. But genetic screening will identify these individuals, and they can develop a lifetime fear of developing a cancer somewhere in the (Cassells, Jenkins, Lea, Calzone, & Johnson, 2003 p 383-90). Since Gene P53 is a gene that helps the body to withstand against the cancers by destroying new cancer cells, absence of P53 can cause cancers in many organs. But the risk is never 100% and not only patients but even doctors are not perfectly certain of the list of organs they have to check regularly, to detect a new cancer. Therefore, similar to some incurable diseases it is not always ethically acceptable to screen people for risk factors (Cassells, Jenkins, Lea, Calzone, & Johnson, 2003 p 383-90).
- Role of nurse in the applications of genetic engineering
- Genetic testing and place of the nurse
Paediatric and obstetric nurses are generally involved in prenatal screening programs which are conducted to detect genetic anomalies in fetuses. Detection of congenital abnormalities such as Down syndrome, phenylketonuria, glucose six phosphate deficiency and Arnold-Chiary malformation can raise several challenges to healthcare practitioners. Even though genetic testing was more common in aforementioned fields of healthcare, now the spectrum of applications has spread even wider. This range includes hematology, oncology and even rheumatology and nurses in these healthcare sections have to participate in genetic counseling and other processes of genetic testing (National Human Genome Research Institute, 2007). However psychological issues, economic problems and some complex issues such as parental guilt has made the need of a better practice of ethical and legal problems encountered in genetic technology much stronger. Understanding the risks of genetic testing and potential future benefits as well as consequences can be very important. Some genetic abnormalities, such as Osteogenesis imperfecta, can be a burden to family from the birth of the child to the death (National Human Genome Research Institute, 2007). But these issues must be addressed with caution since the same disease has several forms with varying severity. Some forms of it allow the patients to live a good quality life after the puberty whereas some other forms can result in hundreds of fractures from birth to an early death. Due to the complexity of such diseases genetic counseling and management of these issues must be done with great care to avoid a possible riddle that may result in a useless psychological depression or a false hope (National Human Genome Research Institute, 2007).
- Ethical and legal issues of genetic manipulation
Genetic manipulation may hold on to few answers to the questions raised by genetic screening. Genetic manipulation involves altering the genome of a living organism to produce a different set of proteins, therefore, conferring a different set of physical or biochemical properties. This method can be used to treat patients with rare diseases as well (McGuire & Gibbs, 2006 p.811). Nursing professionals gained the opportunities to involve in a wide range of activities of genetic engineering. Nurses are increasingly involved in screening, diagnosis and use of genomic health products. Also, the administration of treatments that is based on genetic engineering and developing plans based on genetic information are two areas where nurses are involved. Understanding current ethical problems and gathering knowledge are vital for their duty.
- Demand of knowledge and practice of proper ethics
All nurses may need a certain degree of competency in ethical issues pertaining to genetics, and it can help them to be competent in solving these complex ethical issues (Skirton, Patch & Williams 2005 p.35). Recognizing the values and responsibilities of a person in a certain issue can directly influence the quality of service provided to the clients. Therefore, it is very important to have a personal idea on the framework of ethics involved in genetics. Advocating all clients regarding the issues they have to face and the autonomous right of them to make their own decisions is the responsibility of nurses. Their decision making must be an informed process, and it will provide them a better environment to take the best suited decision for their personal needs. These ethical decisions are not ready-made answers, but final responses to complex family, social and economic facts that surround each person. Even though it is not possible to understand every issue involved in these patients it is always important to provide them the updated and accurate information regarding current practices, genetic and genomic information they need as well as the resources and services available for them to make a decision.
- Ethical and legal issues of modern genetic engineering technology
- Modern perspectives of genetic engineering
There are a few recent developments in genetic technology that can be helpful for the management of patients. Gene therapy and a new branch of genetic technology called genomics are important among them. Gene therapy involves treating patients with genetic anomalies using genetic engineering technology (McGuire & Gibbs, 2006 p.811). For example, a patient who is unable to produce a certain protein can be provided a genetically modified group of cells that can produce the protein. Sometimes these cells can be harvested from the patient’s body and then reimplanted in the original tissue after genetic modifications. Gene therapy has its own limitations such as cost and the facilities. But it still is one of the best options available for many rare genetic diseases that do not have any other definitive treatment. Genomics is an emerging branch of genetic engineering technology that studies the involvement of several genes in a person to give out a particular characteristic outcome. This technology is proven to be beneficial in studying the genetics of diabetes, strokes, myocardial infarctions and high blood pressure (McGuire & Gibbs, 2006 p.811). This approach is used a personalized approach for the patients and provides a better perceptions to understand their diseases. Therefore, understanding these new concepts and the possible treatment options for different genetic diseases can make the life easy for nursing professionals, and they can provide better service for their clients (McGuire & Gibbs, 2006 p.811).
- Ethical and legal issues of modern genetic technology
As the applications of genetic technologies get wider and varied, a number of complex ethical issues arise that require difficult decisions for all concerned. There are many strategies that nurses can adopt in order to help the patients as well as their families to overcome the problems they face in these ethical dilemmas (Skirton, Patch & Williams 2005 p.33). It can be very helpful for instances where legal issues will arise in these complex ethical background. A wide range of applications of genetic technology has also broadened the involvement of nurses in different fields of healthcare sector. Therefore, the possibility of arising newer issues is always expected (National Human Genome Research Institute, 2007).
Ethics and legal issues are part of the day to day lives of nurses and with the advent of genetic engineering technology the situation has become more complex. Genetic engineering has opened up many doors to identifying and treating many rare and common genetically determined illnesses. But the lives of healthcare professionals have not received the same advantages with ethical conundrums evolving around their professions. Some of the genetic technologies are widely recognized and commonly practiced, as in the case of chorionic villous sampling or amniocentesis. But some newer techniques are yet to receive such a wide recognition and hence it is not the easiest of jobs for healthcare professionals like nurses to deal with the ethical issues they encounter daily. Also with the varied applications of genetic engineering technology, specialties such as oncology, hematology and rheumatology in healthcare service have started to utilize newer diagnostic and treatment options provided by genetic engineering. Therefore, the requirements and demands of knowledge in nurses in those fields pertaining genetic technologies have also gone up in order to provide the best care for the patients. Also, the knowledge in genetic engineering technology and ethical dilemmas in certain genetic treatment and diagnostic procedures can provide a safe working environment for the nurses in a world of ethical and legal issues. With modern genetic engineering and its wide array of applications, the need of a better understanding about it among healthcare providers has become more accentuated than never before.
American Nurses Association (2001). Code of ethics for nurses with interpretive statements. Washington, DC: Author.
American Society of Human Genetics, American College of Medical Genetics (1995). Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 57: 1233-1241.
Cassells, J.M., Jenkins, J., Lea D.H., Calzone K., & Johnson E. (2003). An ethical assessment framework for addressing global genetic issues in clinical practice. Oncology Nursing Forum, 30(3), 383-90.
Giarelli, E, Lea, D.H., Jones, S.L., & Lewis, J.A. (2006). Genetic technology: Frontiers of nursing ethics. In V.D. Lachman (Ed.), Applied Ethics in Nursing (p.61 – 80)
Lerman, C., Narod, S., Schulman, K. (1996). BRCA1 testing in families with hereditary breast-ovarian cancer: A prospective study of patient decision making and outcomes. JAMA, 275: 1885-1892.
McGuire, A.L., & Gibbs, RA (2006). Currents in contemporary ethics. Nanotechnology: Journal of Law, Medicine, & Ethics, 809 – 812.
National Human Genome Research Institute. (2007c). Personalized medicine: How the human genome era will usher in a health care revolution. Retrieved on April 9, 2014 from the National Human Genome Research Institute. www.genome.gov/13514107
Skirton, H., Patch, C. & Williams, J. (2005). Applied genetics in healthcare: A handbook for specialist practitioners. New York: Taylor & Francis Group. p33-38.