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1.
J Genet Couns ; 33(1): 135-141, 2024 02.
Article in English | MEDLINE | ID: mdl-38344862

ABSTRACT

The COVID-19 Pandemic placed many challenges on the healthcare system. As healthcare providers were stretched thin and clinics were closed to any non-essential personnel, including learners, educational programs across the country scrambled to meet the needs of their students. In response to restrictions placed on traditional in-person clinical training, the University of Michigan Genetic Counseling Program (UMGCP) designed a Clinical Bootcamp (Bootcamp); a two-weeklong, blended educational activity using a framework of case-based learning (CBL) (McLean, 2016). Journal of Medical Education and Curricular Development, 3, JMECD.S20377). Herein is a description of the theory behind the design as well as specific details of the activities and evaluations to aid implementation and ideas for future applications. Activities developed for the Clinical Bootcamp retain relevance when clinical sites and experienced clinical supervisors are limited resources. We believe the Bootcamp can serve as a tool to expedite the transition of clinical skills to a new setting, allowing students to engage more fully upon entering a new clinical space, leading to optimal use of supervisors' time and experience, and allowing students to maximize the benefit of their time in clinic.


Subject(s)
COVID-19 , Pandemics , Humans , Students , Ambulatory Care Facilities , Clinical Competence
2.
Am J Med Genet A ; 120A(3): 374-80, 2003 Jul 30.
Article in English | MEDLINE | ID: mdl-12838558

ABSTRACT

A patient who refuses to notify their relatives of potential at-risk status brings a genetics provider to face conflicting ethical principles and ill-defined legal precedent. Genetics professionals' views on the disclosure of patient information to at-risk relatives have remained largely unexamined. Prior analyses have been limited to identifying factors contributing to genetics providers' self-predicted responses in hypothetical scenarios. Our group was the first to examine the clinical experience of genetic counselors with this issue [Dugan et al., 2003]. We report here results from our follow-up survey of medical geneticists who are members of either the American Society of Human Genetics and/or American College of Medical Genetics in an effort to identify their experiences in warning at-risk relatives and the factors driving their decision-making processes. Over two-thirds of medical geneticists surveyed (69%, 143/206) believe they do bear responsibility to warn their patients' relatives when found to be at-risk for genetic disease. One-quarter (25%, 31/123) of medical geneticists who faced the dilemma of a patient refusing to notify their at-risk relatives seriously considered disclosure to those at-risk relatives without patient consent. Only four respondents proceeded to warn at-risk relatives of their status. Whereas genetic counselors cited emotional issues as playing a primary role in their decision not to warn, medical geneticists identified patient confidentiality, eventual case resolution by other means, and legal liability as the major factors leading to non-disclosure in 76% of actual scenarios. Responsibilities of medical geneticists, genetic counselors, and non-genetics healthcare professionals facing this issue will need to be more clearly defined to provide optimal medical care within the bounds of acceptable practice.


Subject(s)
Confidentiality/ethics , Genetic Diseases, Inborn , Genetics, Medical/ethics , Humans , Risk Assessment/ethics , Surveys and Questionnaires
3.
Am J Med Genet C Semin Med Genet ; 119C(1): 27-34, 2003 May 15.
Article in English | MEDLINE | ID: mdl-12704635

ABSTRACT

When a patient refuses to inform relatives of their risk for genetic disease, the genetic healthcare professional is faced with conflicting ethical obligations. On one side of the issue is the obligation to respect and protect patients' right to privacy. On the other side is the obligation to prevent harm and promote the welfare of the family members, which suggests a responsibility to warn at-risk relatives, even without the patient's consent. In an effort to examine the actual clinical impact of this issue, we conducted a pilot study that explored genetic counselors' experience with this conflict. A survey was developed and made available to members of the National Society of Genetic Counselors. Questions were either multiple-choice responses or open-ended. Almost half of respondents (119/259; 46%) had had a patient refuse to notify an at-risk relative. The most commonly cited reasons for refusal were estranged family relationships, altering family dynamics, insurance discrimination, and employment discrimination, respectively. Of these 119 counselors, 24 (21%) reported that they seriously considered warning the at-risk relatives without patient consent, and one actually did disclose. Three factors consistently made the counselors less likely to disclose: their patient's potential emotional reaction, the relationship between the relative and patient, and the chance that the relative could be aware of the disease by another means. These results suggest that while the conflict is often encountered in clinical practice, it is rare that the situation remains unresolved to the extent that genetic counselors actually consider warning at-risk relatives. However, when the situation was encountered, the counselors in this study reported a lower rate of disclosure without consent than would have been anticipated based on previous studies that used hypothetical situations. It may be that counselors do not recognize a duty to warn at-risk relatives as integral to their role and professional obligations.


Subject(s)
Disclosure/ethics , Family/psychology , Genetic Counseling/ethics , Genetic Diseases, Inborn/psychology , Data Collection , Disclosure/statistics & numerical data , Family Health , Genetic Diseases, Inborn/diagnosis , Genetic Testing/ethics , Genetic Testing/psychology , Humans , Risk Factors
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