When Genetic Disease Leads to a Surprise Family DNA Discovery
Want to learn a little bit about where the fear and stigma around cousin marriages come from? Ready to be challenged by listening in on a conversation between two genetic counselors discussing past work with families facing uncertain, traumatic pregnancies?
Things get real really fast in this episode of DNA Clarity and Support.
WE WILL WARN YOU UPFRONT,
SOME LISTENERS MIGHT STRUGGLE WITH SOME PARTS OF THE CONVERSATION.
Janice Berliner is a genetic counselor and author whose first novel "Brooke's Promise" is the main point of discussion. In this episode, Brianne and Janice cover a lot of ground. The topics you can expect to hear about are:
hereditary genetic diseases
unexpected family relationship discoveries
accidental incest and cousin couples
other ethical challenges faced by the main characters in Janice's novel "Brooke's Promise"
Janice has chosen to be vague in talking about the details of her novel's storyline, so as not to give away the ending! But she opens up with Brianne and listeners of DNA Clarity and Support about the issues the characters face. Issues like:
facing social stigma
thoughts of pregnancy termination
grappling with the diagnosis of a life-limiting disease in an infant
uncovering upsetting information about genetic family relationships that brings everything into question
This episode is different from previous episodes of DNA Clarity and Support, as we take the discussion to the edge of what's within the comfort zone for most people. We give you a sense of how genetic counselors can be a resource and a safety net when things go sideways in the world of DNA testing.
Brianne briefly mentions resources for those in the community of adoptees, NPE ("not parent expected") discovery-makers, and genealogists and search angels who make a discovery of closely related bio parents. This is sometimes called a high ROH discovery.
Here's information from WatershedDNA.com to help you know where to go and what to do next:
How a high ROH discovery granted a sense of relief and healing for one person
Encouraging compassion around ROH discoveries
If you are curious to understand more about hereditary genetic disease and are willing to explore the ethical twists and turns that arise for a family raising a medically fragile child, order your copy of Brooke's Promise. Reach out to Janice at info@JaniceBerliner.com with your thoughts!
You can find Brooke's Promise at these places:
Brianne's book The DNA Guide for Adoptees includes chapters on many topics discussed in today's episode, including high ROH, support resources for those making unexpected DNA discoveries, and medical genetics. Find your copy on Amazon.