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Key points
- Donor-conceived people desire access to their family medical history, ancestry, and close genetic relatives.
- They want the right to dignity, respect, and the right to be treated ethically.
- Matters of identity, transparency, and connection need to be addressed by the reproductive medicine industry.
Donor conception raises many ethical questions regarding the rights and well-being of donor-conceived people (DCP), the rights and responsibilities of the donor, and equitable reproductive opportunities for parents. Balancing the interests and rights of all parties involved is a complicated and ongoing societal discussion.
With almost 100,000 donor family members, the Donor Sibling Registry (DSR) has spent 25 years listening to, supporting, researching, and facilitating connections for this rapidly growing community. Through consistent education, support, media, and open dialogue, attitudes continue to evolve to more significantly recognize and understand the needs and rights of DCP.
However, within the reproductive medicine industry, an evolution of progressive thought about the rights of DCP has unfortunately been painfully slow or non-existent. All too often, financial concerns and motivations trump ethical pathways forward. Should individuals conceived through donor gametes have the right to access information about their genetic heritage and close relatives? Many think so. This includes information about the donor, including family medical history and updated medical information, ancestry, genetic traits, and information about half-siblings.
Mandating or promising 18 years of anonymity only serves the best interests of sperm banks and fertility clinics. Fear tactics are sometimes used to scare parents and donors into believing that this mandate is in their best interests by telling them nonsense about custody battles and non-existent parental donor rights and financial responsibilities. Keeping a person from their close genetic relatives for the first 18 years of life is not in the best interests of anyone, donor-conceived, adopted, or otherwise.
Adoption and Donor Conception
Adoptees have a Bill of Rights,2 and adoption and donor conception have many similarities, for example, being cut off from one's ancestry, medical history, and close genetic relatives.
However, there are some significant differences. One difference is how "open" describes the agreement within adoption families versus the "open donor" agreements of gamete donors and recipient parents. "Open" adoption is usually an adoption in which the adoptive and birth families share identifying information and have contact with each other during and after the adoption process.
That's not what happens in gamete donation. "Open" gamete donation3 is where a child is deliberately kept from their biological donor family, at best, for a minimum of 18 years. In some other countries, the age is 16, but now the majority of sperm used around the world comes from the U.S. (and Denmark), where donors are mandated or promised 18 years of anonymity. Many egg facilities are facilitating early contact on the DSR, but sperm banks are still refusing to connect donors with parents and offspring before that 18-year timeframe.
Donor-Conceived People's Bill of Rights
Here are some basic tenets concerning donor-conceived people's fundamental rights and aspirations, based on their input. It calls for respect, transparency, and the information needed to build a complete sense of identity/self.
Knowing Ourselves
- Right to Identity: We have the fundamental right to know from birth that we are donor-conceived and to access our full identities, including information about our immediate biological families. We have the right to know about our ancestry. Many of us can't fully understand who we are until we know who and where we come from.
- Accurate Birth Certificates: Our birth certificates should accurately reflect our origins, listing legal and biological parents.
- Open Records: We have the right to possess all documents related to our origin story.
- Comprehensive Information: We hold the right to know our full ancestry, ethnic background, religious heritage, and legal and social details and information.
- Medical/Psychological Information: It is important to have a family medical and psychological history as well as updated information
- Completeness and Belonging: Understanding our origins is crucial for building a complete sense of self.
Connecting with Our Roots
- Donors/Biological Parents: It is not in our best interests to be kept from our biological parents for the first 18 years of life.
- Knowing and Meeting Donor Relatives: We have the right to be curious about, to search for, and to grow up knowing our biological parents and half-siblings, like other citizens.
- Half-siblings: We have the right to know how many half-siblings we have and to be part of a responsible number (not the commonly found 50, 100, or 200+). We should have the opportunity to grow up knowing them.
- Relationship Recognition: The relationships we build with our biological families deserve respect and dignity, like any other familial bond.
Embracing Our Family
- Guilt-Free Relationships: We have the right to navigate our relationships with all our donor siblings and biological parents without guilt.
- Defining Family: We have the right to define and cherish all familial bonds, integrating legal and biological parents and siblings into our concept of family.
Building a Brighter Future
- Advocacy: We're empowered to advocate for our collective dignity. Sharing our stories with families, the public, and the reproductive medicine industry is crucial for achieving transparency and ensuring the ethical treatment of future generations.
The Empty Seat
These rights are about being heard, acknowledged, and respected within an infertility industry that still hasn't included DCP in its policy discussions. Since the beginnings of donor conception early in the last century, policies have been set to include the rights of the facilities to sell the gametes, the rights of parents to buy those gametes to build their families, and the rights of donors to sell their gametes and to remain anonymous. But this isn't an equitable situation as the rights of the donor-conceived people are hardly considered. Matters of identity, transparency, and connection need to be addressed. Donor-conceived people should not only be seated at the policy table but also have their voices listened to first and foremost, as they have the lives most impacted.
References
Input
"We have the right to our true and full identity. We have a right to a relationship with all biological and legal parents from day one. If people grew up knowing their immediate biological family from the very beginning, it would be totally natural and no one would question, just like no one questions knowing their sisters, brothers, aunts, uncles, and grandparents." — A, DCP
Many donors also understand and acknowledge the needs of DCP and have experienced the joys of early connecting.
"I am a donor who, through the DSR, started meeting my bio offspring when they were as young as 3 years old and, in every case, it has been a mutually rewarding and wonderful experience for all involved." — M, Donor
"Is there concern that the number of persons interested in making sperm or egg donations could drastically decrease if they must be known?" — Parent
This is a common concern, and not just from parents. It's often the only reason gamete sellers have for not changing their position on 18 years of anonymity.
The answer is, yes. If all donors were properly educated and counseled about the actual impossibility of staying anonymous (because of DNA testing), the likelihood of producing large numbers of offspring, and the lack of record-keeping and sharing/updating of medical information, the number of donors may decrease. That might be the cost of running a more ethical and responsible donor conception industry.
