1. Explain how nurses can be familiar with the nature and sources of genetic information so that they can assure privacy and confidentiality for their patients?
The detection of genetic disparities that play a role in disease offers information that is improving the understanding of disease biology, hence providing new and specialized therapies. Therefore, it is important for practicing nurses to be aware about genetic and genomic information. Through health promotion, provision of care and understanding patient, nursing brings a significant aspect of genomics. The practice of nursing is gradually inculcating genomic and genetics as part of its fundamental obligation of care provision. This is done procedurally while at the same time considering and having special focus on the ethical concerns. There are multiple avenues through which opportunities for capacity building and training for nurses in these areas can be achieved. Consequently, these healthcare professionals are capable of fully participating in genetic detection procedures (Calzone, Jenkins, Nicol, Skirton, Feero & Green, 2013).
For purposes of patients’ privacy and confidentiality nurses ought to familiarize with the nature and sources of genetic information. As it is important to us, the registered nurse should be aware of the terminology, genetics. Genetics can be defined as the study of individual genes and their influence on rare single nucleotide polymorphisms or disorders. On the other hand, genomics is the study of the entire human genome genes as well as their interrelationships with one another. Furthermore, this assessment incorporates the impacts of these genes on cultural and psychosocial aspects. Practicing nurses should understand the scope of nursing practice with regard to genetics and genomics. As such, the nurses ought to assess their individual beliefs and ethical issues on genetic and genomic information. Furthermore, the nurse should be aware of specialist genetic and genomics services and other agencies in provision of competent care. The nurses should keep up to tabs with interprofessional resources that offer evidence based care to patients requiring genomic or genetic services (Consensus Panel. 2009).
The practicing nurse should be able learn technology and information systems implemented in clinical care. These include electronic health and medical records, client monitoring systems, medication administration and genetic and genomic testing technologies. A critical component of nursing practice in relation to genomics and genetics is the autonomous nature of patients’ rights in decision making and informed consent. The nurse should be knowledgeable about the potential benefits, limitations and risks of genetics and genomics information. This ensures privacy when discussing the information with the patient. Additionally, the nurse should acquaint himself or herself with the legal, ethical and social concerns surrounding accessibility and use o genetic information. The nurse should be aware of the relationship genetics and health, prevention, diagnosis and treatment. The nurses should develop ethical evaluation mechanisms which support the dispensation of appropriate genomic and genetic healthcare (Consensus Panel. 2009).
2. Describe how the American Nurses Association Code to Ethics (book) defines Privacy?
The term privacy as defined by the American Nurses Association Code of Ethics is advocacy of an environment that offers unwanted intrusion into a patient’s life. Such an environment offers physical and auditory privacy for addressing matters of a personal nature. Furthermore, it provides guidelines and practices that ensure that the information is confidential at all times (Nursing World. 2001).
3. A woman who tests positive for hereditary breast/ovarian cancer informs you, her nurse that she does not wish to share this information with her sisters and her mother as she does not get along with them. The concern for her sisters and mother is that each of them now has a 1 in 2 chance to carry the same breast/ovarian cancer gene mutation that confers a significantly increased risk to develop breast/ovarian cancer. Defend how you, the nurse, can be guided by the American Nurses Association Code of Ethics for Nurses to seek help and counsel from experienced individuals of the Ethics Board within your institution.
Under circumstances when a patient does not want to share the genetic information significant to health with immediate family members, an ethical dilemma arises. In this instance, the mother and the sisters of such a patient presents a dilemma to the nurse, notwithstanding the fact the patient’s confidentiality has to be upheld. This is scenario is extremely significant because the other members have a probability of 50% of having the same gene mutation, hence genetic susceptibility to the disease. Therefore, as a nurse, one is guided by the American Nurses Association Code of Ethics in seeking assistance and advice from experienced personnel within the ethics board. Consequently, at such an occurrence the nurse does not possess legal right to contravene the confidentiality of the patient. The well being of the patient can be jeopardized. Furthermore, the mutual trust between the nurse and the patient can be devastated through unnecessary accessibility to the data. Additionally, the unsuitable revelation o identifiable information regarding the patient can further hamper the patient-nurse relationship (Nursing World. 2001).
Fundamentally, the safety, rights and well being of patients must be the primary factors in arriving at professional judgment regarding the dissemination of confidential data. The typical practice of nursing and fundamental role of care provision requires sharing of relevant information. This is specifically important to healthcare members who essentially require knowing about such information. in this regard, the information that can be shared is that pertaining to the welfare and treatment of such patients, and to those involved directly with the care o the patient. The obligations of confidentiality do not remain absolute, and as such there may be need to modify the guidelines. The main objective of such a transformation is to offer protection to patients, other non-informed parties. Additionally, such disposition o patient information can be mandatory in instances where there are deemed to be of public concern. Since this is a case of progression in management of risk procedures with regard to breast/ovarian cancer, the information can be disclosed under an outlined protocol. However, the procedural outlining of such interventions on disclosure of information must guarantee patient safety, rights and well being.
4. Do you, the nurse, have the legal authority to breach the confidentiality of the client-nurse relationship to disclose genetic information about one individual to another individual?
The legal implications applicable to nurses in making disclosures are dependent and held on the high standard of knowledge and interpretation outlined by the specialty. Legal obligations to maintain confidentiality of genetic information cut across both ways. When information of genetic status of a patients’ family are inaccessible, nurses are denied the information required for assessment. Against this, nurses as well as other who have information about a patient’s genetic data are obliged to protect the information. This is only feasible when the patient has not authorized the disclosure of such information. In principle, the confidentiality clause blocks nurses from making revelations to a patient’s next of kin of health risks to them that become pronounced in the procedural diagnosis and treatment. Breast or ovarian cancer identified in a patient may link genetic predisposition, hence genetic susceptibility to siblings or immediate members. However, with respect to confidentiality responsibility, there is no legal role to warn such relatives (Dickens, Pei, & Taylor, 1995).
5. Propose how a solution for this ethical dilemma that arises for nurses and other healthcare providers when a patient does not choose to share genetic information with other family members when it may be important to their health.
In cases where a patient decides not to share or allow disclosure of genetic information to their relatives, nurses or healthcare providers may intervene. Since the family members may have a genetic predisposition thus increasing susceptibility to disease, the genetic risk is unpreventable. Furthermore, this genetic risk is not solely caused by the patient. Nonetheless, timely awareness allows the members of the family in seeking counseling and hence reduces the risk of falling sick. Pragmatically, these can be achieved by means of monitoring and preventive approaches. Genetic guidance raises novel and intricate concerns of legal burden. Nurses, just like other healthcare professional can be held accountable for laxity in their duties which may lead to damage. It is unclear how genetic advocators rationalization of the risks linked to positive genetic test leads to psychological damage. Nurses should remind patients of the need of communicating results with their immediate family members. This should essentially be a provision of the elements of informed consent an a fundamental aspect of pre-test guidance (Lea, 2008).
There still remains an unclear guideline on the legal ramifications of conveying such vital information to other family members who may be at risk. For instance, in a particular decision, the Supreme Court offered a rather a contradicting verdict to a lower court. The physician’s role to warn on cancer predisposition is achievable by educating the patient on familial risks associated with cancer. The lower court decided that a physician’s obligation to advise transcended directly to biologic relative who may be at risk. Consequently, the best possible solution can be achieved through communication of the risk affecting the family with regard to the patient. It is extremely vital to stress on the significance of sharing such information with other members of the family for them to benefit too (Lea, 2008).
6. Contrast respect for the patient’s confidentiality, while on the other hand the duty to warn other family members of their potential health risks.
The detection of gene alterations in a patient whose family may be affected may certainly influence the medical management and thus can be used as a useful baseline in testing the other members. There are wide variations in genetic testing models and as such, it is extremely vital that the nurse conducts a genetic assessment service. With this regard, the nurse should possess experience in cancer genetics and specifically be able to make interpretations of pedigree data. The nurses and healthcare practitioners need to identify genetic cancer predisposition examination. this should be typically an avenue to manage patients and conduct risk evaluation through existing and new care standards. The genetic examination for susceptibility of various syndromes is continually being revolutionalized with tremendous efforts being directed towards research (Lea, 2008).
Genetic testing is continuously playing a crucial role in the surgical and medical management of known gene mutation patients and their families. Despite the enormous advancement in research on human genes which confer these syndromes as well as the increased medical options, there still remains a significant aspect in pursuing testing. This is especially critical in the context of pre- and post genetic assessment. Fundamentally, the genetic assessment outcome will have substantial significance on psychological and medical aspects. A positive outcome of the genetic assessment leads to earlier frequent monitoring and preventive measures. Subsequently, with such an intervention, the management of the disease is easily addressed. However, I the genetic test result is negative, there tends to be emotional relief regarding susceptibility. The benefits of genetic assessment are counteracted by flipsides and therefore pose several risks. A positive outcome of the examination may cause distress not only to the patient but also to the family members. Ambiguous assessment outcomes due to misinterpretation have far reaching implications that may pose adversity to the patient and family (Lea, 2008).
7. Explain the impact of genetic information. How does a person’s genetic information affect that individual and society’s perception of that individual?
In a majority of circumstances, genetic information only provides prediction without any treatment options for specific syndromes. However, interventions that are developed to influence preventive or lifestyle aspects of provision of care may be resisted. The most challenging aspect in provision of genetic services is how to adequately organize individuals in making informed choices. The cultural impacts, educational training and personal or family experience will obviously play a central role. Potentially, there will be cases of genetic discrimination and stigmatization to the patient as well as their family members. A number of responses to personal genetic data can lead to development of disruptions among families. The discrimination of individuals based on their genetic information is a violation of many state laws. Segregation on the basis of genetic information especially against cancer patients is suspected as disabilities by insurance firms and employers (Cassells, Jenkins, Lea, Calzone & Johnson, 2003).
Employers have a legitimate financial interest in genetic information regarding their employees and potential employees. This is because; those individuals who show susceptibility have an increased risk of incurring huge expenses during their sick days. Such factors may have severe impacts with regard to choices when it comes to job promotions and career advancement. The human rights have championed for equal opportunities as applied to other normal human beings in realms of employment (Lea, 2008). In areas of newborn screening of various sex-linked syndromes, the parents may suffer psychological risks of parental guilt. Infants who undergo screening and show positive outcomes for various inheritable diseases also undergo stigma. These children have low self-esteem and may face discrimination on health insurance and employment. The identification of infants as carriers may hamper the parent-child relationship. Subsequently, the parents may misunderstand or misinterpret the outcome thus lead to a potential social segregation (Lea, 2008).
References
Calzone, K., Jenkins, J., Nicol, N., Skirton, H., Feero, W., & Green, E. (2013). Relevance of Genomics to Healthcare and Nursing Practice. Journal of Nursing Scholarship , 1-2.
Consensus Panel. (2009). Essentials of Genetic and Genomic Nursing:Competencies, Curricula Guidelines, and Outcome Indicators. American Nurses Association , 1-80.
Dickens, B., Pei, N., & Taylor, K. (1995). Legal and Ethical Issues in Genetic Testing and Counselling for Susceptibility to Breast, Ovarian and Colon Cancer. Canadian Medical Association Journal , 813-818.
Nursing World. (2001, February 21). Code of Ethics for Nurses with Intepretive Statements. Retrieved May 15, 2013, from Nursin World: http://www.nursingworld.org/ethics/CODE/nwoe/html
Cassells, M., Jenkins, J., Lea D., Calzone K., & Johnson E. (2003). An ethical assessment framework for addressing global genetic issues in clinical practice. Oncology Nursing Forum, 383-390.Lea, D, (January 31, 2008). Genetic and genomic healthcare: Ethical issues of importance to nurses OJIN: The Online Journal of Issues in Nursing,
