- Manage the screening and recruiting of research subjects, devising strategies for effective recruitment, contacting, and following up with patients as required; engage with families to establish and maintain rapport, explain the study protocol, and obtain consent; provide pre-test genetic counselling for initial analysis, ongoing reanalysis, and follow-up testing; and collect and document research participants' clinical data for various patient databases.
- Coordinate sample collection and shipment, participate in multidisciplinary team meetings for patient-specific discussions, work with the research team to review outcomes of testing, and maintain up-to-date documentation for all study-based interactions.
- Manage and coordinate collaborative innovative research studies, setting project priorities and goals with investigators; prepare, submit, and manage ethics applications, data sharing agreements, and other applications; and perform data analyses and write reports that track the study's progress towards goals and timelines.
- Assist with the supervision and work assignment of research staff and trainees.
- Provide guidance in all communication activities with study stakeholders, including parents, children, referring clinicians, investigators, sponsors, staff, and national and international research partners; and develop manuscripts as a co-author for publication.
- Maintain knowledge of current developments in genomics and genetic counselling by reviewing relevant literature, consulting with other professionals, and attending relevant education programs.
- Master's degree in Medical Genetics or Genetic Counselling and one year of internship in medical genetics, or the equivalent in training and experience. Board eligible for certification under the Canadian Association of Genetic Counselling or American Board of Genetic Counselling.
- Willingness to respect diverse perspectives, including perspectives in conflict with one's own
- Demonstrates a commitment to enhancing one's own awareness, knowledge, and skills related to equity, diversity, and inclusion
- Board certified under the Canadian Association of Genetic Counselling or American Board of Genetic Counselling.
- Experience coordinating research projects in an academic or health research setting.
- Knowledge of project management methodologies and principles, project evaluation and monitoring, and multiple project interaction and integration.
- Ability to effectively use MS Word, Excel, PowerPoint, and Adobe Acrobat at an intermediate level.
- High degree of computer literacy with ability to use word processing, spreadsheet, internet and electronic mail applications at an intermediate level.
- Superior organizational skills.
- Effective oral and written communication, interpersonal, and multi-tasking skills.
- Self-motivated to work effectively independently and in a team environment.
• Ability to prioritize and work effectively under pressure to meet deadlines. - Ability to be thorough, accurate, and have a high level of attention to detail.
- Ability to exercise tact and discretion when handling sensitive and/or confidential matters.
- Ability to make professional decisions and recommendations on all aspects of the research work.
- Completion of the TriCouncil Policy Ethics course is required prior to beginning this work.
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Research Genetic Counsellor - Vancouver, Canada - The University of British Columbia
Description
Job Summary
The Genetic Counsellor will coordinate the activities of the Rare Disease Discovery Hub (RDDH) at BC Children's Hospital Research Institute. Many rare genetic disorders defy diagnosis through conventional tests available through the health care system, and only innovative assays offered through research can find an answer for these affected patients. Each patient enrolling in this study will likely have a different, and very rare, condition, which requires flexibility on the part of the research team. Because most patients enrolling will be children, and because most pediatric rare diseases are genetic, the research team must engage with, and be responsive to, the entire family. The Genetic Counsellor will play a major role in liaising with families and their clinical care team, explaining their options for research-based studies, and in coordinating the unique flow of samples and results for each case.
Organizational Status
The Genetic Counsellor will report to and receive general guidance from the Principal Investigators, Drs. Lehman and Turvey. The Genetic Counsellor will work closely and liaise with other research and administrative managers and will interact with numerous clinicians, faculty, staff and students throughout BCCH, UBC, nationally and internationally. The incumbent will also supervise research assistants.
Work Performed
1. Participant Interaction and Counselling:
2. Research Coordination and Management:
3. Communication and Collaboration:
4. Professional Development:
Consequence of Error/Judgement
Given the clinical information collected in our research and the use of patient samples, the highest level of discretion and confidentiality is required.
Failure to adopt a professional, respectful, "Participant / Family First" mentality could result in alienation or distrust in our study participations. The goal of advancing science falls second to ensuring we are addressing the needs of our participants as best as possible.
Provision of inaccurate information to families, particularly if construed as medical advice, could result in serious harm to participants. It is important to limit information to that which is applicable to the study processes; medical-related questions should be re-directed to the study doctors and/or the individuals' responsible care providers.
Errors in the management of research accounts, as well as errors in reporting procedures, could result in a waste of financial resources. Inadequate documentation, organization, or communication can result in harmful misunderstandings, wasteful redundancy, or loss of compliance with good practice protocols. Institutional approval could be revoked and studies halted.
Supervision Received
Works under minimum supervision, receiving specific instructions only on problems or on matters which depart significantly from established policy and procedure. The candidate will work under the supervision of the Drs. Turvey and Lehman. There will be regular reviews of progress, team discussions and assignment of new duties.
Supervision Given
The genetic counsellor will be responsible for the supervision of staff.
Minimum Qualifications
Preferred Qualifications
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