Genomic and Implications for Health Information Technology
1. Access the web site: Policy Issues in Genomics
2. Read about the various considerations within the sections of webpage.
3. Answer the following questions:
1. How are ethical considerations being addressed?
2. What additional ethical issues can you think of that are not discussed on this page? List and explain two issues.
3. Access the Informed Consent section. How are ethical issues addressed on this form?
Other questions to be addressed:
1. How do you envision that genomics and personalized medicine will change the landscape of health care?
2. Evaluate the complexity of the technical issues related to managing and utilizing genomic data as discussed in chapter 24.
3. Without discrimination as the framework, preventive medicine and wellness models may desire genetic testing in adults to identify genetic diseases before they cause symptoms. Outline the considerations for the shifts in health care delivery caused by personalized medicine including the management of personalized data.
Write a 5 page paper using APA 7 format to answer the questions. Be sure to cite your source. Remember to include a conclusion and reference page.
Genomic and Implications for Health Information Technology
The increased use of the utilization of genomics in the healthcare industry has resulted in numerous issues related to the applicability of genomics, ethical, and data issues. The ethical issues in the utilization of genomic technology have therefore become of significant concern while obtaining informed consent in genomic research is an issue of significant interest. This paper will consider ethical considerations that are being addressed in genomics and genome editing, the issue of informed consent in genomic research, how genomics and personalized medicine will impact the healthcare industry, and the complex and technical issues related to the management and utilization of genomic data in the healthcare industry.
How are Ethical Considerations being Addressed?
There are numerous ethical concerns related to genomics which include safety, informed consent, justice, and equity. The ethical concern of safety in genomics arises because of the possibility of off-target effects such as gene-editing in the wrong place and other challenges such as mosaicism which occurs when some cells carry the edit but others do not during the gene-editing process (Feeney et al., 2021). To address the ethical issue related to the safety of genomics numerous scholars have therefore suggested that germline genome editing should not be used for clinical reproductive purposes before such technology is deemed to be safe through research. Currently, the risk of germline genome editing cannot be justified by potential benefits (Feeney et al., 2021). The second ethical issue related to genomics includes informed consent. Most scholars have therefore significantly worried about the possibility of obtaining informed consent because most of the standard subjects involved in genomics such as germline therapy are embryos. The issue of informed consent in genomics also emerges because of the unknown risks of germline therapy which makes it difficult for prospective parents or individuals involved in germline therapy to provide informed consent. The ethical consideration of informed consent is therefore being addressed in the field of genomics by restricting mainstream use of germline genome-editing until such technology has been approved as being safe through rigorous research processes (NHGRI, 2019).
Justice and equity are also vital ethical issues that have emerged in the field of genomics. As with many new technologies, there have been significant concerns that genome editing will only be accessible to high-income individuals and accelerate the already-existing disparities in access to healthcare services interventions. There has also been significant worry across society that an increase in prevalence and use of germline editing can create a class of individuals that is superior to the general population and who are defined by the quality of their engineered genome which can exacerbate inequalities (NHGRI, 2019). The ethical issues related to Justin and equity are being addressed in the field of genomics by restricting The use of germline editing technology until adequate research has been conducted to determine the safety of the technology(Feeney et al., 2021).
What additional ethical issues can you think of that are not discussed on this page? List and explain two issues
The additional ethical issues related to genomics include beneficence and nonmaleficence. Healthcare practitioners are therefore required to be always involved in interventions that can bring direct benefit to their patients and avoid interventions that can cause direct harm to their patients. By following the principle of beneficence healthcare professionals should therefore advocate for more research in germline and genome editing to ensure the safety of the technology through research before the wide adoption of such technology in healthcare settings. Healthcare professionals should also be at the forefront preventing the misuse of germline and genome editing so as to avoid negative effects on patients such as off-target effects and mosaicism (NHGRI, 2019).
Access the Informed Consent section. How are ethical issues addressed on this form?
Considering the informed consent set of the genome.gov website different ethical issues are addressed in the form including informed consent, confidentiality, and privacy among others (NHGRI, 2019). Informed consent is an important element in genomics. It is therefore important and essential for the interests and rights of research participants to be respected given that their contributions such as health-related information and samples are critical for the success of most human scientific research (NHGRI, 2019). Participants involved in genomic research and researchers should therefore be actively involved in dialogue and understand the specific considerations that might be associated with a contribution to genomic data. For instance, researchers should take time to make research participants understand that economic data can be stored and used indefinitely. Researchers involved in genomic research should also take time to effectively sensitize individuals of their susceptibility to different conditions some of which might be unexpected after genome editing. During genomic research, researchers should take time to sensitize research participants that genomic research carries significant risks that might be unclear and uncertain (Feeney et al., 2021).
How do you envision that genomics and personalized medicine will change the landscape of health care?
Genomics will significantly change the landscape of healthcare by allowing more accurate prediction, diagnosis, and treatment of diseases. Through genomics healthcare practitioners will be able to provide more personalized medicine to patients including gathering genetic data of patients to be able to prescribe the most effective medication depending on the patient’s needs and illnesses (Bilkey et al., 2019). Genomics and personalized medicine will also revolutionize the treatment of chronic conditions such as cancer in that genomics can help to tailor medical treatment to the individual characteristics of each patient through an understanding of the genetic profile and the unique molecular biology of a given patient that makes them susceptible to certain diseases. The use of genomics and personalized medicine will also help in the formulation of individualized treatment plans that can help in the provision of more targeted treatment and improve healthcare outcomes for patients. Eventually, genomics and personalized medicine will enhance efficiency in the healthcare industry and reduce wastage that originates from inaccurate treatments and misdiagnosis (Bilkey et al., 2019).
Evaluate the complexity of the technical issues related to managing and utilizing genomic data as discussed in chapter 24.
The management and utilization of genomic data raise numerous complex technical issues including the technical demands of genomic sequencing. The acquisition distribution analysis and subsequent storage of large data sets require unique technological solutions that have not been developed. Considering that genomic data requires massive and unique technological solutions a lot of investment is required in the technology which means both companies and governments are wary of the ability of genomic data and technology repaying investments (Wong, 2019)). The management and utilization of genomic data also raise technical issues related to security and data privacy. A lot of questions have emerged on who can have at the denominator in order to conduct research and how governments companies and research groups can ensure the genomic data does not end up in the wrong hands. The management and utilization of genomic data have also released technical issues related to the evolution of a genomic data market. Policymakers and regulators are therefore concerned that genomic data can be illegally traded in markets which can bring a lot of challenges in healthcare environments (Wong, 2019).
Without discrimination as the framework, preventive medicine and wellness models may desire genetic testing in adults to identify genetic diseases before they cause symptoms. Outline the considerations for the shifts in health care delivery caused by personalized medicine including the management of personalized data.
The main considerations for the shift in healthcare delivery that might be caused by personalized medicine relate to intellectual property rights and regulatory frameworks, confidentiality and privacy of patients, education, and genetic counseling. The development of personalized medicine as a result of the enhancement of genetic technology will cause an evaluation of intellectual property rights (Mathur & Sutton, 2017). Some scholars argue that patenting DNA sequences can have a significant impact on the development of personalized medicine and inhibit access to personalized medicine, especially among marginalized communities. According to Mathur & Sutton, (2017) privacy of patients and confidentiality is a significant issue in the field of personalized medicine. A lot of medical issues have been raised with the issue of accidental disease discovery when patients are being screened for other diseases. Another secondary issue in personalized medicine is the occurrence of stigmatization especially in instances where genetic data is related to a given patient is leaked. The leaking of genetic data or accessing of such data by third parties can therefore expose patients to issues such as stigmatization or exploitation by health insurance companies or even employers who might make a decision not to hire a given individual because of their genetic data which indicates that they have a given disease (Mathur & Sutton, 2017).
In summary, there are numerous ethical concerns related to genomics which include safety, informed consent, justice, and equity. Genomics will significantly change the landscape of healthcare by allowing more accurate prediction diagnosis and treatment of diseases. Through genomics healthcare practitioners will be able to provide more personalized medicine to patients including gathering genetic data of patients to be able to prescribe the most effective medication depending on the patient’s needs and illnesses. The management and utilization of genomic data raise numerous complex technical issues including the technical demands of genomic sequencing. The main considerations for the shift in healthcare delivery that might be caused by personalized medicine relate to intellectual property rights and regulatory frameworks, confidentiality, and privacy of patients, education, and genetic counseling
Bilkey, G. A., Burns, B. L., Coles, E. P., Bowman, F. L., Beilby, J. P., Pachter, N. S., Baynam, G., J. S. Dawkins, H., Nowak, K. J., & Weeramanthri, T. S. (2019). Genomic Testing for Human Health and Disease Across the Life Cycle: Applications and Ethical, Legal, and Social Challenges. Frontiers in Public Health, 7. https://doi.org/10.3389/fpubh.2019.00040
Feeney, O., Cockbain, J., & Sterckx, S. (2021). Ethics, Patents and Genome Editing: A Critical Assessment of Three Options of Technology Governance. Frontiers in Political Science, 3. https://doi.org/10.3389/fpos.2021.731505
Mathur, S., & Sutton, J. (2017). Personalized medicine could transform healthcare. Biomedical Reports, 7(1), 3–5. https://doi.org/10.3892/br.2017.922
NHGRI. (2019, March 13). What are the Ethical Concerns of Genome Editing? Genome.Gov. Retrieved March 1, 2022, from https://www.genome.gov/about-genomics/policy-issues/Genome-Editing/ethical-concerns
Wong, K. C. (2019). Big data challenges in genome informatics. Biophysical Reviews, 11(1), 51–54. https://doi.org/10.1007/s12551-018-0493-5