DNP 810 issues that undermine client rights to make genetic and genomic-related decisions and act

There are several issues that undermine client rights to make genetic and genomic-related decisions and act. Identify two issues you have seen undermine these rights in your clinical setting. What are potential solutions for each? What is your role as the patient advocate with each issue? Explain. Support your rationale with a minimum of two scholarly sources.

Paramount in the conduct of genetic studies is concern about protecting the privacy of potentially sensitive genetic information generated about research participants. A number of groups have offered recommendations for protecting the privacy of study

participants’ genetic information (for example, Annas et al., 1995; Fuller et al., 1999; NBAC, 1999). Privacy concerns arise because many individuals, institutions, and/or organizations may have an interest in knowing a person’s genetic status, and such knowledge has the potential to result in stigmatization, discrimination, and other adverse effects.

Potential Societal Stigmatization and Discrimination

Examples of insurance (e.g., auto, health, and life) and employment discrimination related to genetic information have been reported by consumers and by genetic counselors and nurses in genetics (U.S. Congress, Office of Technology Assessment, 1992; Geller et al., 1996; Lapham et al., 1996). These cases also reveal that difficulties with other societal agencies and institutions such as blood banks, adoption agencies, the military, and schools may be possible (Geller et al., 1996). It has been suggested that educational and legal institutions may have an interest in genetic status for identifying learning problems (Geller et al., 1996; Fuller et al., 1999) and deciding custody and paternity disputes (Fuller et al., 1999). Medical benefits reportedly have been denied to retirees with illnesses determined to have a known genetic basis (Fuller et al., 1999), an issue that may be particularly relevant to incorporating genetic sampling and studies into demographic studies of aging populations.

Despite these studies, the extent of the risk of genetic discrimination in health insurance and other societal institutions has been difficult to pin down. Examples of genetic discrimination, such as those included in the studies referred to above, resulted in legislation in many states and at the federal level, through the Health Insurance and Portability and Accountability Act (HIPAA) (for overviews see Fuller et al., 1999; Hall and Rich, 2000). However, current policies and existing laws to protect the privacy of genetic information are limited in number and nature and vary according to state, while comprehensive federal protections do not exist. A recent study aimed to assess the effectiveness of laws prohibiting health insurers’ use of presymptomatic genetic information (Hall and Rich, 2000). The study used a variety of approaches to collect information from representatives of various groups, including genetic counselors, state departments of insurance, and health insurers. Similar data were collected from seven different states with and without laws prohibiting health insurers’ use of presymptomatic genetic information. After a lengthy analysis, researchers were unable to document any substantial degree of genetic discrimination by health insurers. They were also unable to document a difference in insurers’ actions between states with and without genetic-specific laws or before and after enactment of state laws in a particular state. However, they did discover that insurers were well aware of the existence and content of such laws, and suggest that the existence of such laws has served to heighten insurers’ awareness of the “social legitimacy” of using presymptomatic genetic information.

In addition to genetic-specific laws and regulations, protection of participants in federally funded research is addressed by a two-pronged approach, that is, review by an institutional review board (IRB) and execution of an informed consent process. Most institutions that receive some federal funds require that nonfederally funded projects be reviewed by their IRB as well. The critical importance of the informed consent process in describing the privacy-associated risks of genetic research studies and the mechanisms in place to protect participants is discussed in detail by Botkin in this volume, as well as elsewhere (Institute of Medicine, 1994; Clayton et al., 1995; American Society of Human Genetics, 1996). For federally sponsored research, the IRB is responsible for ensuring that participants’ risks are minimized, their rights and welfare are protected, and their consent to the research protocol is informed and voluntarily given (Fuller et al., 1999; Department of Health and Human Services, 1991). IRBs also consider issues related to the confidentiality of research records and how these protections are communicated to study participants. Specific suggestions about considering these issues within the context of genetic research studies are offered in the IRB Guidebook (OPRR, 1993). However, as noted elsewhere, research on current practices to protect confidentiality of research data, including genetic data, is limited, and best practices have not yet been developed (Fuller et al., 1999).

One option that may be available to genetic researchers is to obtain a federal Certificate of Confidentiality. Certificates of Confidentiality may apply to certain types of genetic research (see Earley and Strong, 1995; Fuller et al., 1999). Originally developed to provide protections for research into illegal or very sensitive activities, such as illegal behavior, sexual practices, and alcohol or drug use, Certificates of Confidentiality protect federally and privately funded institutions from being compelled to reveal identifying information about participants in a research study (OPRR, 1993). However, as noted by Fuller et al., these Certificates do not protect research participants from being compelled to reveal research data or information.

Another option available to investigators is to work with anonymous or unlinked samples, i.e., samples that cannot be linked to any identifying information. It is often difficult in genetic studies to work with unlinked samples, since matching DNA sequences with medical histories or pedigree information is integral to the research process. In addition, it may still be desirable for individuals to be able to exert some control over how their samples are used, even if the samples have had all identifying information removed (see below; Clayton et al., 1995; Botkin, this volume). However, if unlinked samples can be used, this affords protection from many privacy concerns.

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The university’s policy on late assignments is 10% penalty PER DAY LATE. This also applies to late DQ replies.

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Questions to Instructor Forum: This is a great place to ask course content or assignment questions. If you have a question, there is a good chance one of your peers does as well. This is a public forum for the class.

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Important information for writing discussion questions and participation

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Hello class and welcome to the class and I will be your instructor for this course. This is a -week course and requires a lot of time commitment, organization, and a high level of dedication. Please use the class syllabus to guide you through all the assignments required for the course. I have also attached the classroom policies to this announcement to know your expectations for this course. Please review this document carefully and ask me any questions if you do. You could email me at any time or send me a message via the “message” icon in halo if you need to contact me. I check my email regularly, so you should get a response within 24 hours. If you have not heard from me within 24 hours and need to contact me urgently, please send a follow up text to

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Plagiarism is highly prohibited. Please ensure you are citing your sources correctly using APA 7th edition. All assignments including discussion posts should be formatted in APA with the appropriate spacing, font, margin, and indents. Any papers not well formatted would be returned back to you, hence, I advise you review APA formatting style. I have attached a sample paper in APA format and will also post sample discussion responses in subsequent announcements.

Your initial discussion post should be a minimum of 200 words and response posts should be a minimum of 150 words. Be advised that I grade based on quality and not necessarily the number of words you post. A minimum of TWO references should be used for your initial post. For your response post, you do not need references as personal experiences would count as response posts. If you however cite anything from the literature for your response post, it is required that you cite your reference. You should include a minimum of THREE references for papers in this course. Please note that references should be no more than 5 years old except recommended as a resource for the class. Furthermore, for each discussion board question, you need ONE initial substantive response and TWO substantive responses to either your classmates or your instructor for a total of THREE responses. There are TWO discussion questions each week, hence, you need a total minimum of SIX discussion posts for each week. I usually post a discussion question each week. You could also respond to these as it would count towards your required SIX discussion posts for the week.

I understand this is a lot of information to cover in 5 weeks, however, the Bible says in Philippians 4:13 that we can do all things through Christ that strengthens us. Even in times like this, we are encouraged by God’s word that we have that ability in us to succeed with His strength. I pray that each and every one of you receives strength for this course and life generally as we navigate through this pandemic that is shaking our world today. Relax and enjoy the course!

Hi Class,

Please read through the following information on writing a Discussion question response and participation posts.

Contact me if you have any questions.

Important information on Writing a Discussion Question

• Your response needs to be a minimum of 150 words (not including your list of references)
• There needs to be at least TWO references with ONE being a peer reviewed professional journal article.
• Include in-text citations in your response
• Do not include quotes—instead summarize and paraphrase the information
• Follow APA-7th edition
• Points will be deducted if the above is not followed

Participation –replies to your classmates or instructor

• A minimum of 6 responses per week, on at least 3 days of the week.
• Each response needs at least ONE reference with citations—best if it is a peer reviewed journal article
• Each response needs to be at least 75 words in length (does not include your list of references)
• Responses need to be substantive by bringing information to the discussion or further enhance the discussion. Responses of “I agree” or “great post” does not count for the word count.
• Follow APA 7th edition
• Points will be deducted if the above is not followed
• Remember to use and follow APA-7th edition for all weekly assignments, discussion questions, and participation points.
• Here are some helpful links
• Student paper example
• Citing Sources
• The Writing Center is a great resource