Donor Conceived People and The Reproductive Medicine Industry Disconnect

09/15/2015 11:03 am ET Updated Dec 06, 2017

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It's an innate human desire to want to know where we come from. It's important for both our medical and psychological well being to know about our biological first-degree relatives, our ancestry, our medical backgrounds, and our genetics.

While there may be some donor-conceived people who don't have a desire to seek out their half siblings or biological parents (just as in adoption), many more do indeed desire to search for and to find their relatives. Some for medical reasons, and some also feel a deep and painful loss from being disconnected from their genetic kin. Rebecca H. explains (in the book Voices of Donor Conception: Moving Beyond Secrecy and Shame):

My feelings are difficult to explain to people who take their roots for granted. An adopted person once described the sensation of what is now termed 'genealogical bewilderment' as having to drive through life without a road map. I find it to be an apt description of my situation. People who know both of their biological parents find it hard to grasp the enormity of what I am missing. Simply having information about the sort of people they are, and what things they are capable of doing, creates a baseline that you don't realize is comforting unless you have to live without it.

For thousands on the Donor Sibling Registry, connecting with formerly unknown biological relatives has lead to better medical care and screenings, a greater sense of self-understanding and has been a very important component of identity formation, and for many donor offspring, long before the age of 18. Proper acknowledgement, respect and attention for the people who are suffering most with this lack of genetic knowledge, both psychologically and medically is desperately needed.

Donor conceived people follow in the path of adoptees in the arena of disclosure, along with the right to search for and know about their origins. The Adoption Congress (2007) states the following in their Assisted Reproduction Technology Statement:

The American Adoption Congress believes that all individuals whose genetic and biological origins are different from those of their legally recognized families have the right to know those origins. This includes people created through the donation or sale of eggs or semen, the transfer of embryos, gestational surrogacies, or any other reproductive technology. Knowledge of one's origins can be vital to the psychological and physical well being of human beings. Denying a person this information can have potentially serious consequences upon that person's family relationships, health and reproductive choices.

On the Donor Sibling Registry group discussion page, one donor-conceived (D.C.) adult explains:

Knowing that the fertility industry profited from the act of deliberately disconnecting me from half of my biological family has left me with a constant sense of having had my rights violated.

So much has been written by D.C. people about why losing a connection to a parent through parental romantic decisions and chance is not the same as having that connection severed by an industry that brokered your sale. D.C. people can be grateful to exist and to have been wanted by the parents who raised them, and still feel pain, frustration, and anger about the circumstances of their conception. I wish that the parents of DC people would stop seeing their children's pain, frustration, and anger as a bad thing or as an undesirable result.

Pain, frustration, and anger are natural and good responses to injustice. Sorrow and grief are natural and good responses to rejection by a biological parent. Our anger and our grief can be fuel to advocate for regulations that respect our rights. Our emotions are not the problem; the problem is having human beings being treated as a product by the fertility industry.

Donor-conceived people are being denied the basic right to know their origins, and have become a voiceless minority in our society, without the necessary information to make informed and competent decisions about their own psychological and medical care.

The US Surgeon General reports on their website:

A recent survey found that 96 percent of Americans believe that knowing their family history is important." To help Americans focus on the importance of knowing family health history, The US Surgeon General along with the Department of Health and Human Services created the "Family Health History Initiative." The website notes that, "Tracing the illnesses suffered by your parents, grandparents, and other blood relatives can help your doctor predict the disorders to which you may be at risk and take action to keep you and your family healthy.

The American Medical Association agrees with the importance of knowing your family medical history:

Gathering a complete and accurate family medical history is extremely important as genetic medicine explains more diseases.

In Genetics Home Reference, the National Library of Medicine's web site for consumer information about genetic conditions and the genes or chromosomes related to those conditions, has this to say about the importance of knowing your family health history:

A family medical history is a record of health information about a person and his or her close relatives. A complete record includes information from three generations of relatives, including children, brothers and sisters, parents, aunts and uncles, nieces and nephews, grandparents, and cousins.

Families have many factors in common, including their genes, environment, and lifestyle. Together, these factors can give clues to medical conditions that may run in a family. By noticing patterns of disorders among relatives, healthcare professionals can determine whether an individual, other family members, or future generations may be at an increased risk of developing a particular condition.

Family health history is a useful tool for understanding health risks and preventing disease in individuals and their close relatives.

The US Surgeon General, The CDC, The National Library of Medicine, The US Department of Health and the American Medical Association all stress the importance of knowing one's family health history. And the American Adoption Congress additionally acknowledges both the medical and the psychological importance of knowing about one's origins.

A donor's medical profile (sometimes included when a person buys sperm or eggs) is a snapshot in the life of a healthy young donor, and doesn't reflect what happens the next year, or afterwards to a donor or his or her immediate family (siblings, children or parents). Additionally, many medical and psychological diseases are adult-onset so donors couldn't possibly report them at the time of donation. Some donors are not sure about their relative's diseases, and some are not honest when filling out the medical profile, afraid that if they tell the whole truth, they will not be accepted into the donor program. The Donor Sibling Registry's Medical Page lists hundreds of reported medical issues from donor-conceived people, their parents and the donors. Some of these medical issues, like Hypertrophic Cardiomyopathy (HCM), a serious heart condition, have been shared in large half sibling groups. The sharing of this medical information amongst half sibling families on the DSR has saved lives.

Research shows that 84% of surveyed sperm donors and 97% of surveyed egg donors say they've never been contacted for any medical updates. 23% of those sperm donors and 31% of those egg donors said that they felt that they, or close family members, had medical/genetic issues that would be important to share with families.

One former sperm donor, now a doctor, said in a letter to the Journal of the American Medical Association (the letter was never published by JAMA):

This practice was firmly entrenched in the medical community long before the DNA revolution provided the tools to discover genetic relatives and the basis of many human diseases. Our incomplete knowledge of these genetic factors implies that assessing the family history of ailments is still an essential element of medical diagnosis. Also ignored in these earlier procedures was the fact that the children resulting from anonymous gamete donation were deprived of the right to know half of their ancestry, which is now recognized as a fundamental human right. From my viewpoint, medical doctors who took the Hippocratic oath, and who were either sperm or egg donors, are morally obligated to allow their biological children access to their family medical history.

Some donors say that they have called in a new medical issue to the bank or clinic, and have been promised that it would be passed along to families- but when the families have called in they have been told that no medical issues have ever been reported. The fact that fertility industry economics would subvert the medical and psychological care of a donor child is unconscionable.

In addition to conducting and publishing many research studies, the Donor Sibling Registry now has more than 47,300 donors, parents and offspring, many of whom have shared their stories. Where is the attention from the reproductive, medical and psychological industries, and the oversight to ensure that all donor-conceived people have the right to their own origins, genetics, ancestry and personal medical history?

Cartoon Illustration by Jen Moore, Outreach Director, Donor Sibling Registry, and mother to two teen-aged donor-conceived sons.

http://www.hhs.gov/familyhistory/ Family History is Important For Your Health
http://www.cdc.gov/genomics/public/file/print/FamHistFactSheet.pdf