STANDARD OF CARE
GENETICS CONSULTATIONS FOR GAMETE DONORS
Statement of Purpose
These recommendations represent the ideal standard of care for evaluating gamete donor family history for their suitability for gamete donation according to published guidelines.
The genetics consult is an assessment and analysis of the donor’s personal and family history, providing the agencies, physicians, and intended parents information about any risk to offspring as well as recommendations for additional testing that may be indicated based on the family history.
The genetics consult can also provide information about positive genetic screening test results, when applicable.
Who needs a genetics consult?
Ideally, all gamete donors will have a genetics consult.
Since the intended parent also provides 50% of the genetic material, they should be offered a genetics consult as well. This allows the risk to the offspring to be fully assessed.
How long is the consultation valid?
The genetics consult should be updated at least every calendar year. The consultation is considered out of date one calendar year after its completion. If the donor provides new, significant information about her family health history, the donor should be re-referred to the genetic counselor for an updated report even if it is within the calendar year. Additionally, if a donor is identified as a carrier for a genetic condition, the consultation should be updated to reflect this information.
Who Performs Genetics Consultations? Genetic Counselor Qualifications
Genetics consultations must be performed by a Licensed and Board Certified Genetic Counselor.
Ideally the evaluations would be conducted by a genetic counselor who is well-versed in the ethical and practice guidelines specific to ART and egg donation.
What is a genetic counselor?
Genetic counselors are specially trained healthcare professionals who have extensive knowledge about genetic diseases and how they are inherited. Genetic counselors can help individuals make informed, personalized decisions about the genetic health of their family.
A genetic counselor can provide risk for disease based on family history, identify potential genetic health risks, give information about genetic conditions and inheritance patterns, discuss genetic testing options, help clients understand genetic results, and provide support throughout the process.
The genetic counseling process integrates:
- Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence.
- Education about inheritance, testing, management, prevention, resources and research.
- Counseling to promote informed choices and adaptation to the risk or condition.
Genetic Counselors providing genetics consultations for gamete donors should be members of the ASRM GC SIG, the NSGC ART SIG and should attend conferences related to ART.
Standard of Care for Genetics Consultations
The genetics consultation is designed to fully inform the agency, clinic and intended parents of family history related risks so that decisions about acceptability of the donor can be made prior to the cycle. Knowing this information minimizes the risk of harm to these parties by providing disclosure and documentation.
The genetics consultation includes the following:
- 3 generation pedigree for the donor
- research about specific conditions/ testing
- pedigree analysis
- genetic screening recommendations
- genetic test result interpretation
- communication of test results if desired
- recommendation for further studies as indicated by test results
Follow up genetic counseling for any positive genetic test result should be provided to any donor or intended parent. Follow up should include: general information about the condition, inheritance pattern of the condition, the risk for your offspring to inherit the gene, further testing that may be indicated, risk for affected offspring.
Genetics Consult Reports
The consultation summary is provided to the ordering agency (as the client) and also to the donor. The donor should review the report for accuracy and contact the genetic counselor with any clarification. The consultation report contains information about the donor’s medical history and recommended health surveillance for the future and should be retained by the donor for future reference.
The consultation summary is provided to the IVF clinic by the agency.
Ideally, the agency will also provide the summary to the intended parents so that they may benefit from detailed information and descriptions of conditions in the donor’s family.
Locating Qualified Genetic Counselors
Genetic counseling can be provided remotely. Many clinics are affiliated with a genetic counselor. Genetic counselors can be located through the genetic counseling SIG of ASRM or through the National society of genetic counselors (NSGC).
A Genetics Consultation performed to Standard of Care serves to protect all stakeholders involved in collaborative reproductive arrangements: donors, intended parents, offspring, agencies and IVF clinics. In addition, this process serves to ensure that physicians, and agencies follow best professional practice.