Are the donors' race / ethnicity determined by their self-reporting, or was DNA testing used? For example, a Dominican donor who self-reports as Dominican; however, the DNA test shows 45% Spanish, 45% African, 10% Caribbean Indian.
@cryo-admin If ancestry info is solely based on self reported information, then donors are potentially not being screened completely? For example, if a donor doesn't report Ashkenazi Jew descent (because he may not know himself) he will not be screened for additional genetic diseases that are recommended for donors with Jewish ancestry. What is being done to prevent this from happening?
@Glida As there are limitations to all of our knowledge about our family histories, it is certainly possible that any person may not be aware of a particular ancestry. However, all of our DNA Advantage Donors have had extensive carrier screening panels that include "Jewish" genetic diseases and other conditions that would traditionally only have been performed if a donor identified as having a specific ethnicity. A donor's Genetic Test Summary can be downloaded from his profile page.
@cryo-admin While there are limitations on family history, ancestry screening should be more reliable than self-reporting. So donors who are not DNA Advantage Donors potentially are not getting screened as needed due to ancestry self-reporting. What is being done to prevent non-DNA Advantage Donors from missing screening?
@Glida Please note that although our DNA Advantage Donor program is relatively new, we have about 100 donors currently available with expanded genetic testing. Also, all incoming donors will have expanded genetic testing.
Here is information from our Genetics Department:
The American College of Medical Genetics and Genomics only recommends carrier screening for cystic fibrosis and spinal muscular atrophy on all individuals. Screening for disorders common among individuals of Ashkenazi Jewish ancestry is only recommended for individuals who identify as having Ashkenazi Jewish ancestry. There is no requirement to perform this screening on all individuals even though it is possible that someone may not be aware of their ancestry. Based on these professional guidelines, all California Cryobank donors have been screened appropriately for genetic disorders. However, the enhanced screening performed on DNA Advantage Donors is independent of reported ethnicity and helps to address this limitation in an individual’s knowledge. Given your concerns, it may be preferable for you to select a DNA Advantage Donor. Another option to consider is that we also offer Special Testing Services in which additional genetic screening may be possible on a donor if you or another client has screened positive for a mutation and your preferred donor has not had screening for that condition: https://cryobank.com/services/genetic-counseling/donor-screening/#answer11
It may also be helpful for you to know that our donor applicants have a consultation with a genetic counselor to evaluate their family history. This includes an assessment of how well they know their family history. If it is determined that the applicant is not knowledgeable of his family history and unable to obtain the information, he is not accepted into the donor program.
Despite all of these options and efforts, there will always be limitations to every donor’s and every client’s awareness of their family medical histories. For this reason, we recommend that all clients and their healthcare providers carefully assess all known, reported genetic information as well as the potential of currently unknown or unreported genetic information in choosing a donor, so that you can ensure that you are comfortable with your donor selection before you proceed.
Nurat
Posts: 11
Comments
@Nurat The donor's ancestry is self-reported.
Most Dominicans are afro latino
Most Dominicans will also say they’re White. I wanted to be clear about how the ethnicity is being determined.
@cryo-admin If ancestry info is solely based on self reported information, then donors are potentially not being screened completely? For example, if a donor doesn't report Ashkenazi Jew descent (because he may not know himself) he will not be screened for additional genetic diseases that are recommended for donors with Jewish ancestry. What is being done to prevent this from happening?
@Glida As there are limitations to all of our knowledge about our family histories, it is certainly possible that any person may not be aware of a particular ancestry. However, all of our DNA Advantage Donors have had extensive carrier screening panels that include "Jewish" genetic diseases and other conditions that would traditionally only have been performed if a donor identified as having a specific ethnicity. A donor's Genetic Test Summary can be downloaded from his profile page.
Regards,
Nicole
California Cryobank
@cryo-admin While there are limitations on family history, ancestry screening should be more reliable than self-reporting. So donors who are not DNA Advantage Donors potentially are not getting screened as needed due to ancestry self-reporting. What is being done to prevent non-DNA Advantage Donors from missing screening?
@Glida Please note that although our DNA Advantage Donor program is relatively new, we have about 100 donors currently available with expanded genetic testing. Also, all incoming donors will have expanded genetic testing.
Here is information from our Genetics Department:
The American College of Medical Genetics and Genomics only recommends carrier screening for cystic fibrosis and spinal muscular atrophy on all individuals. Screening for disorders common among individuals of Ashkenazi Jewish ancestry is only recommended for individuals who identify as having Ashkenazi Jewish ancestry. There is no requirement to perform this screening on all individuals even though it is possible that someone may not be aware of their ancestry. Based on these professional guidelines, all California Cryobank donors have been screened appropriately for genetic disorders. However, the enhanced screening performed on DNA Advantage Donors is independent of reported ethnicity and helps to address this limitation in an individual’s knowledge. Given your concerns, it may be preferable for you to select a DNA Advantage Donor. Another option to consider is that we also offer Special Testing Services in which additional genetic screening may be possible on a donor if you or another client has screened positive for a mutation and your preferred donor has not had screening for that condition: https://cryobank.com/services/genetic-counseling/donor-screening/#answer11
It may also be helpful for you to know that our donor applicants have a consultation with a genetic counselor to evaluate their family history. This includes an assessment of how well they know their family history. If it is determined that the applicant is not knowledgeable of his family history and unable to obtain the information, he is not accepted into the donor program.
Despite all of these options and efforts, there will always be limitations to every donor’s and every client’s awareness of their family medical histories. For this reason, we recommend that all clients and their healthcare providers carefully assess all known, reported genetic information as well as the potential of currently unknown or unreported genetic information in choosing a donor, so that you can ensure that you are comfortable with your donor selection before you proceed.
Regards,
Nicole
California Cryobank