Resources/Referral/Follow Up

Case Summary

Current genetic counseling job tasks were determined by the American Board of Genetic Counseling as the outcome of a Genetic Counseling Practice Analysis (Hampel et al., 2009 ). The following is a list of the Resources and Follow Up tasks, as well as the Ethical/Legal and Research/Study Coordination tasks, many of which are relevant to this case:

  1. Resources and Follow Up

    1. Communicate follow up plan

    2. Present case information (e.g., to clients, to healthcare providers, to insurers)

    3. Deliver oral case summary

    4. Compose written case summary

    5. Adhere to the medical and legal requirements of case documentation

    6. Advocate for clients in medical and non-medical settings

    7. Evaluate resources and services

      1. support groups

      2. community agencies

      3. client education materials

    8. Refer to other professionals and agencies

  2. Ethical/Legal

    1. Comply with privacy and confidentiality regulations regarding personal health information

    2. Inform clients of potential limitations to maintaining privacy and confidentiality of genetic information

    3. Discuss real and potential discrimination risks

    4. Comply with National Society of Genetic Counselors Code of Ethics

    5. Employ ethical principles to address clinical dilemmas

    6. Seek consultation with experts (e.g., hospital ethics board, NSGC Ethics Committee)

    7. Practice in accordance with published position statements (e.g., testing of minors, duty to re-contact)

    8. Practice in accordance with published practice guidelines

  3. Research/Study Coordination

    1. Comply with federal regulations for protection of human subjects in research

    2. Maintain a database

The case invites thought about the conversation between Shawn and his supervisor.

  • What personal and professional preparations should Shawn pursue before taking on the role of study coordinator?

  • What actions should they take to protect and respect the privacy of potential study subjects and prevent discrimination and stigma at the personal and community levels?

  • To what extent are these actions and preparations universal and to what extent are they culturally-specific to this location and/or this study?

  • What obligations do the researchers have to address these questions before, during, and after the study is complete?

Identification and evaluation of appropriate patient educational resources is an important task for the genetic counselor. When appropriate resources do not exist, materials will need to be developed. The focus of this case has been in evaluating, developing, and presenting client educational materials and informed consent documents using principles of health literacy. Counselors should work with the interpreters, translators, and cultural brokers at their institutions when developing and translating literature, forms, letters, etc. We listed below several excellent resources for individuals involved in ensuring the proper translation of health care documents, including informed consent forms. These resources provide useful information for genetic counselors working in a variety of settings, and especially for providing services to patients with language barriers of any kind.

 

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