The past, present and future of service delivery in genetic counseling: Keeping up in the era of precision medicine

Stoll, Katie; Kubendran, Shobana; Cohen, Stephanie A.

doi:10.1002/ajmg.c.31602

Cited by 149 publications

(139 citation statements)

References 74 publications

Supporting

Mentioning

139

Contrasting

Order By: Relevance

“…Given current shortages of these specialists, however, it might not take long for medical geneticists and genetic counselors to become overwhelmed with these types of referrals. 10 The day will soon come, then, when practical constraints will force many primary care clinicians to learn more and begin counseling patients about DTC genetic results without involving genetics specialists.…”

Section: Referring For Management Of Dtc Genetic Testing Results: Knomentioning

confidence: 99%

How Should Primary Care Physicians Respond to Direct-to-Consumer Genetic Test Results?

Knapp

2018

AMA Journal of Ethics

View full text Add to dashboard Cite

In this case, a primary care physician is presented with direct-toconsumer genetic test results and asked to provide counseling and order follow-up diagnostics. In order to deal effectively with this situation, we suggest physicians need look no further than the practice principles that guide more routine clinical encounters. We examine the rationale behind 2 major clinical ethical considerations: (1) physicians have obligations to help their patients achieve reasonable health goals but are not obligated to perform procedures that are not medically indicated; and (2) primary care physicians do not need to know everything; they just need to know how to get their patients appropriate care. CaseA 34-year-old woman, Sarah, schedules a routine visit with her family physician, Dr S, to discuss results of a direct-to-consumer genetic test she ordered from an online vendor. After sending a saliva sample, Sarah received several reports that she accessed online and printed for her visit with Dr S. quantitative, and normative research on ethical and regulatory issues raised by both biorepository research and pediatric translational and clinical genomics.Esther E. Knapp, MD, MBE is a pediatric hematologist-oncologist at the University of Louisville School of Medicine in Louisville, Kentucky. She completed additional fellowship training in pediatric stem cell transplant medicine. Her research interests as a bioethicist and clinician focus on ethical issues in transplant medicine, pediatric precision oncology, and clinician moral distress.

show abstract

Section: Referring For Management Of Dtc Genetic Testing Results: Knomentioning

confidence: 99%

How Should Primary Care Physicians Respond to Direct-to-Consumer Genetic Test Results?

Knapp

2018

AMA Journal of Ethics

View full text Add to dashboard Cite

show abstract

“…Genetic services have traditionally been provided in a relatively small number of specialty clinics, with time‐intensive case preparation and counseling procedures. This model of care offers only limited access to services for the growing number of individuals who will need them, suggesting a need for more condensed protocols and greater use of telemedicine approaches . Thus, in the second REVEAL trial, we examined the impact of a more clinically feasible genetic‐risk communication protocol for first‐degree relatives.…”

Section: Reveal: a Case Study In Study Designmentioning

confidence: 99%

“…This model of care offers only limited access to services for the growing number of individuals who will need them, suggesting a need for more condensed protocols and greater use of telemedicine approaches. 25 Thus, in the second REVEAL trial, we examined the impact of a more clinically feasible genetic-risk communication protocol for firstdegree relatives. The extended protocol from our first trial was compared against a condensed protocol where an inperson pretest genetic counseling session was replaced with the provision of an educational brochure; this modification resulted in fewer sessions and 57 percent less face-to-face time with the study clinician.…”

Section: Research On the Psychological Impact Of Genetic Susceptibilimentioning

confidence: 99%

Assessing the Psychological Impact of Genetic Susceptibility Testing

Roberts¹

2019

Hastings Center Report

View full text Add to dashboard Cite

The expanded use of genetic testing raises key ethical and policy questions about possible benefits and harms for those receiving disease‐risk information. As predictive testing for Huntington’s was initiated in a clinical setting, survey research posing hypothetical test scenarios suggested that the vast majority of at‐risk relatives wanted to know whether they carried a disease‐causing mutation. However, only a small minority ultimately availed themselves of this opportunity. Many at‐risk individuals concluded that a positive test result would be too psychologically overwhelming. A substantial literature suggests that individuals are often more resilient than anticipated in coping with many different health‐related stresses. Much of my own work in the field has been through the Risk Evaluation & Education for Alzheimer’s Disease study (REVEAL), a series of randomized clinical trials assessing the impact of genetic susceptibility testing on asymptomatic individuals at risk for Alzheimer’s disease. Our experience in developing and implementing four successive, multisite trials provides some potentially useful lessons for the field. More people will be asking for their personal genetic information. Better understanding will help us decide when access is appropriate and how best to disclose results in a manner that supports adjustment to test findings and promotes use of genetic information to improve human health.

show abstract

“…(Cruz‐Correa et al, 2017) Of those diagnosed, at least 15% of individuals with cancer are candidates for cancer genetic counseling. (Stoll, Kubendran, & Cohen, 2018) Broader access to GCRA may inform individuals from R/E groups who have cancer about treatment options, risk projections for secondary cancers, and clinical trial participation. Disease management often involves financial considerations and the need to treat other co‐morbid conditions.…”

Section: Introductionmentioning

confidence: 99%

Education on cancer risk assessment and genetic counseling to address cancer health disparities among racial/ethnic groups and rural populations: Implementing culturally tailored outreach through community health educators

Miguel-Majors

Whitaker

Davis

et al. 2020

Journal of Genetic Counseling

View full text Add to dashboard Cite

While significant progress is being made in cancer prevention and treatment, opportunity exists to make a difference for populations bearing an uneven burden of the disease. Research indicates that increased inherited risk and more‐aggressive forms of cancer among underserved racial/ethnic (R/E) groups (e.g., African American/Black, American Indian/Alaska Native, Asian, Hispanic/Latino, and Native Hawaiian/Other Pacific Islander) and rural populations may explain the cancer incidence and mortality disparities these populations experience. These racial and ethnic (R/E) categories reflect the standard naming convention for the classification of federal data on race and ethnicity. One method by which progress can be made for these underserved populations is to expand knowledge of, access to, and uptake of two existing and impactful preventive oncology tools—cancer screening and genetic counseling and risk assessment (GCRA). Individuals from these populations who have cancer may benefit by learning about treatment options, risk projections for secondary cancers, and clinical trial participation. Effecting change in community beliefs and behaviors regarding these preventive tools and yielding the aforementioned benefits will see greater success if shepherded by individuals accepted and trusted in the respective communities. This was the charge taken on and embraced by Community Health Educators in the National Cancer Institute (NCI) Center to Reduce Cancer Health Disparities’ (CRCHD) National Outreach Network (NON) and U54 Comprehensive Partnerships to Advance Cancer Health Equity (CPACHE) programs. The NCI CRCHD integrated into the work of these CHEs an emphasis on cancer genetic education. As part of their undertaking, NON and CPACHE CHEs detail education and outreach strategies that may be helpful to increase GCRA awareness and uptake in R/E groups and rural populations and, in turn, bring positive change for those with or at risk for heritable cancers.

show abstract

The past, present and future of service delivery in genetic counseling: Keeping up in the era of precision medicine

Cited by 149 publications

References 74 publications

How Should Primary Care Physicians Respond to Direct-to-Consumer Genetic Test Results?

How Should Primary Care Physicians Respond to Direct-to-Consumer Genetic Test Results?

Assessing the Psychological Impact of Genetic Susceptibility Testing

Education on cancer risk assessment and genetic counseling to address cancer health disparities among racial/ethnic groups and rural populations: Implementing culturally tailored outreach through community health educators

Contact Info

Product

Resources

About