Genomic Medicine and Informatics
The use of genetic information in health care presents many challenges, one of which is the protection of patient privacy. Given enough genetic information, a precise identification of a person can be made. Read the Health Informatics: A Systems Perspective Chapter 9 case study on page 201 and address the following:
- Explain if you agree with the perspective of Sandy or Grace? Articulate the reasons why.
- Compare and contrast the differences between the case of Henrietta Lacks, Jean and the Havasupai?
- Explain how genomic databases can be used to accomplish meaningful research while protecting patient privacy.
- Identify two US genomic institutes that focus on genomic medicine.
- Compare and contrast their mission and vision.
- Compare and contrast their major focus areas of research.
- Did the site indicate if patient samples will be sequenced and the data combined with each participant’s medical record to allow researchers and research partners to investigate new approaches to disease prevention, diagnosis and treatment?
- If asked to consent to your genomic information being used in research, explain if you would consent or decline? Include your rationale for consenting or declining.
Your Paper:
- Must be two to four, double-spaced pages in length, excluding the title and reference pages, and formatted according to APA style as outlined in the Writing Center.
- Must Include a title page with the following:
- Title of paper
- Student’s name
- Course name and number
- Instructor’s name
- Date submitted
- Must begin with an introductory paragraph that has a succinct thesis statement.
- Must include a minimum of three references, (excluding the textbook), on a separate reference page, formatted according to APA style as outlined in the Writing Center.
Expert Solution Preview
Introduction:
Genetic information plays a crucial role in the healthcare sector, but the protection of patient privacy is a significant challenge. This paper will address various questions related to genomic medicine and informatics, including the protection of patient privacy, the comparison between different cases, the use of genomic databases for research, and identification and comparison of two US genomic institutes that focus on genomic medicine.
Question 1:
Sandy and Grace have different perspectives on the use of genetic information in the healthcare sector. Sandy believes that the use of genetic information should be restricted to certain medical procedures and diagnoses, while Grace states that genetic information should be used to enhance the quality of healthcare. I agree with Grace’s perspective because the use of genetic information can help diagnose and detect diseases earlier, leading to effective prevention and treatment. Moreover, genomic medicine can provide tailored treatments for patients, improving patient outcomes and quality of life.
Question 2:
The case of Henrietta Lacks, Jean, and the Havasupai tribe all have one thing in common: the protection and privacy of genetic information. Henrietta Lacks’ case highlights the challenges of conducting research on human subjects without informed consent. Jean’s case demonstrates the ethical issues surrounding the use of genetic information in healthcare, including familial DNA searches. Lastly, the Havasupai tribe case emphasizes the importance of informed consent in genetic research, especially for marginalized and indigenous communities.
Question 3:
Genomic databases can be used to accomplish meaningful research while protecting patient privacy by following various protocols and regulations. First, the de-identification of personal information can provide anonymous data for researchers to analyze without compromising privacy. Second, obtaining informed consent from patients and respecting their wishes for the use of their genetic information is crucial. Lastly, implementing strict data security measures can prevent misuse or abuse of genetic information.
Question 4:
Two US genomic institutes that focus on genomic medicine are the National Human Genome Research Institute (NHGRI) and the Institute for Genomic Medicine (IGM). NHGRI’s mission is to enhance the understanding of genomic medicine and its related ethical, legal, and social implications. In contrast, IGM’s mission is to accelerate the integration of genomics into medical care to improve patient outcomes. NHGRI’s major focus areas of research include genomic variation, genomic function, and genomic technology development. In contrast, IGM’s focus areas include genomic medicine research, clinical applications of genomics, and genomic data analysis and interpretation. NHGRI’s website does not indicate if patient samples will be sequenced and the data combined with each participant’s medical record. However, IGM’s website states that patient samples will be sequenced and the data will assist researchers and partners in investigating new approaches to disease prevention, diagnosis, and treatment.
Question 5:
I would consent to my genomic information being used in research. The reasons for consenting include contributing to scientific advancement and the greater good, improving healthcare quality with personalized treatment, and improving prevention and treatment outcomes. Moreover, informed consent and strict data security measures will protect my privacy and prevent the misuse of my genetic information.
