Donor Sibling Registry

Nederland, CO, United States

Donor Sibling Registry

Nederland, CO, United States
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News Article | September 14, 2016
Site: www.fastcompany.com

When she was 22, Jordon Goulder lost her dad to the neurodegenerative disease called ALS. That same year, she discovered that he wasn't her biological father. Goulder, who is now 26 and works in public relations, learned from her mother that her parents had experienced fertility troubles before she was born. A fertility specialist recommended that they try an anonymous sperm donor. Her parents agreed to keep this quiet until her father passed away. Goulder was curious about her biological father from the outset: Was he alive and healthy? Did he have children or share her features? Her mother didn't have much information aside from a few biographical details and the name of the facility, which had subsequently shut down. When Jordon tried calling the hospital next door, the operator laughed at her request and muttered something about patient privacy before hanging up. "I was emotional at the time, so I don't remember the conversation verbatim," she remembers. "It was enough to stop me from looking for him for quite a while, and caused me to harbor some anger that I may never have access to information about my genes." But Goulder didn't give up for good. She sent in samples of her saliva to various consumer-genetics services, which connect users with their family members. On two of these sites, 23andMe and FamilyTreeDNA, she was connected to one of her biological father's cousins. But AncestryDNA revealed a direct match to a man who chose to publish his name, as well as other relatives with the same last name. She quickly found his profile on Facebook, and noted that they shared the same thick, dark eyebrows. From there, she was able to track down a daughter who happened to live nearby in Portland, Oregon. "I know what she looks like so I look for her all the time, but also fear that I’ll run into her," she says. Goulder is far from alone in using these services to find a biological parent. Due to a lack of record keeping, it's far from clear how many children each year are conceived via a sperm or egg donor, although some estimate that it ranges between 30,000 and 60,000 a year in the U.S. Sites such as Donor Sibling Registry have popped up to offer advice and a community to donors and donor-conceived people, including guiding them to DNA databases with more than 50,000 members where they can be matched with relatives. "As the database grows, the probability that a user will find a close genetic relative increases," says Ken Chahine, executive vice president at Ancestry. "But it wasn't designed for that purpose." Goulder attempted to get in touch with her donor via Facebook and Ancestry's messaging services, but she doesn't know if he received her message. He hasn't logged in for a while. It's possible that he doesn't want to know her, has pushed the whole thing out of his mind, or simply doesn't know she's trying to contact him. In an age of consumer DNA testing, some bioethicists say that it's time to revisit the notion of anonymous sperm donation. Is it really possible in this day and age to keep a donor's identity anonymous? And should the sperm banks do more to warn potential donors that they might be found if they or a relative submits their DNA to a genealogical service? "When these sperm banks were set up, there were often confidentiality agreements in which a prospective father would say that he never wanted to be contacted, or that he'd be open to it when the child is 18," says Kayte Spector-Bagdady, a postdoctoral research fellow at the Center for Bioethics & Social Sciences in Medicine at the University of Michigan. "But services like 23andMe have created an additional opportunity that supersedes these previous arrangements, where children created by egg or sperm donors can figure it out." "If a donor doesn’t want to be found, they simply shouldn't donate." 23andMe CEO Anne Wojcicki says that one of the three major reasons that people sign up is to find family members: "The adoptive community and sperm donor community are really active." At a minimum, Spector-Bagdady recommends that sperm banks disclose this to their potential donors. Others have gone a step further in calling for lawmakers to ban anonymity altogether, arguing that donor offspring like Goulder should have the right to know the identity of their biological parents. "If a donor doesn’t want to be found, they simply shouldn't donate," says Wendy Kramer, director of Donor Sibling Registry, which is a not-for-profit organization. "Yet the sperm banks don’t tell prospective donors that because they’ll make less money." Kramer says her son was one of the earliest users of these sites, and figured out the identity of his donor back in 2005. One sperm donor I spoke to, who requested anonymity, said he had his own reservations about DNA-testing services, but he didn't discuss this with the sperm bank. Moreover, as far as he could tell, the facility didn't ask for references or verify anything he told them about his Ivy League education or health history. He had donated sperm on a whim after graduating with a mountain of college debt ("My thinking at the time was that if I got $100 every time I masturbated, that's a good deal"). He put the experience to the back of his mind until our conversation, in which he shared myriad concerns. "They seemed to want people with attractive qualities, but those people might be sensitive to requests to speak to their mother or their college," he said. "It was a balancing act of attracting donors, while reducing friction." According to Kramer, the root of the problem is the lack of rules or regulation when it comes to buying and selling sperm. For instance, the U.S. Food and Drug Administration requires that donors get tested for some communicable diseases, but there is no federal requirement that sperm banks screen for genetic diseases. As a result, testing practices vary widely among different facilities. In recent years, cases have hit the headlines where a donor unknowingly has hundreds of children, or wasn't properly tested for various genetic diseases. One family was told that a donor had a clean bill of health, but their child was born with cystic fibrosis. Both the mother and the donor were carriers of the disease. Kramer adds that sperm banks are also inconsistent in how they mediate relationships between donors and their offspring. She says that many will send an ambiguous letter in the mail, and then call it a day. Cases have reached the courts where sperm banks failed to notify a family when a donor gets sick or has a history of disease, or didn't amend their donor’s medical profile as new medical information came to light. Of a handful of sperm banks contacted by Fast Company, only California Cryobank responded to a request for comment. Company spokesman Scott Brown stressed that the team will facilitate contact when the child is 18, if the donor is open to it. He says many donors who requested anonymity are willing. Brown agrees that the rise of commercial DNA testing companies has been transformative, but he doesn't agree that all anonymity should be waived. "It would be unreasonable for a sperm donor today to believe they’ll never be contacted," he says. In light of this, he urges donor offspring to wait until they're 18 and initiate contact through the sperm bank rather than through 23andMe, Facebook, and the like. "That sets up a difficult and devastating situation for both parties," he says. "If you’re going to show up on the guy’s doorstep, it could affect his life and jeopardize things for all other offspring that might be waiting the proper amount of time." Brown says the company will screen potential candidates to check if they're a carrier for a variety of genetic diseases, including cystic fibrosis and spinal muscular atrophy. Ancestry's team has researched the implications of customers using the service to connect with donor or adoptive parents. Their core mission is to help people understand their origins. Several years ago, the company invited a group of bioethicists into their offices to figure out what to do. "They were in favor of giving the right information to people, rather than trying to hide it," says Chahine. But all those who register for the site can request anonymity so their identity wouldn't be revealed to a donor offspring, for instance. One 23andMe user in her mid-forties has bonded with her eight new brothers and sisters. 23andMe's Wojcicki says the team has thought about ways to adequately educate users about surprising results. Users have learned through the site that they were adopted or donor-conceived, before a parent told them the truth. Research from 2005 found that cases of paternity discrepancy, when a child is identified as being biologically fathered by someone other than the man who believes he is the father, occurs between .8% to 30% in the population. The company's terms and conditions make it explicitly clear: "This information may evoke strong emotions and has the potential to alter your life and worldview. You may discover things about yourself that trouble you and that you may not have the ability to control or change." Experts are divided on whether these sites should be doing more to educate and inform their users. Spector-Bagdady commends 23andMe for its explicit language, but is concerned that few people read the terms of service. She has argued in the past that this information is inherently medical, as it relates to family medical histories, and that direct-to-consumer companies have enhanced obligations to return these results more like clinicians than for-profit businesses. It's unclear how they would do that, as these sites don't know ahead of time whether they're delivering surprising results. "From an ethical perspective, it's still very much up for debate," she says. All told, those I spoke to who connected with donor parents or half-siblings relayed mostly positive experiences. One 23andMe user in her mid-forties, who goes by the pseudonym Marcia, has bonded with her eight new brothers and sisters. None of them never met their biological father, who passed away at a fairly young age. "This has been a huge and unexpected blessing," she says. "You'll find many people who are angry or feel a loss of identity, but this struck us differently." Jordon Goulder's wedding is coming up in a few weeks. For the time being, she's hit the pause button on her search for her biological father. She's considering a certified letter at some point, so at least she'll know if he's received it. Her friends are confident that he submitted DNA to Ancestry, so he must be curious. She's keeping her hopes up. "I think it will happen eventually."


PubMed | Wellesley College, Donor Sibling Registry and Middlebury College
Type: | Journal: Social science & medicine (1982) | Year: 2015

This paper compares three groups of gestational mothers who relied on gametes from donors they did not know. The three groups are women who have conceived with donor sperm and their own eggs, women who have conceived with donor eggs and a partners sperm, and women who have conceived with embryos composed of both donor eggs and donor sperm. The paper explores three issues. First, it considers whether intending parents select sperm and egg donors for different attributes both when they are chosen as the only donor and when they are chosen as donors contributing to an entire embryo. Second, it examines how women imagine the donor. Finally, it looks at how women conceptualize the donor as an individual who contributes to their childs characteristics. Two significant findings emerged in this analysis of survey data. First, the data show that gametes are gendered with different attributes both when those gametes are separate and even more so when seen as complementary parts of a whole. Second, the data show that women minimize the impact of the egg donor (both when a sole contribution and especially when part of the complementary whole) and thus ignore the influence or impact of the egg donor relative to how they make sense of the influence or impact of the sperm donor. The data for this study comes from an online survey developed by the authors.


Beeson D.R.,California State University, East Bay | Jennings P.K.,California State University, East Bay | Kramer W.,Donor Sibling Registry
Human Reproduction | Year: 2011

Background This study examines the findings from the largest survey to date of donor-inseminated (DI) offspring and focuses on respondents' learning of the method of their conception and their desire to contact their donor. Methods Online questionnaires were completed by 741 DI offspring, of whom 61.8 have heterosexual parents and 38.2 have lesbian parents. Respondents were recruited via the Donor Sibling Registry, a non-profit US-based international registry that facilitates communication between donor-conceived offspring and their non-biological and biological relatives. Data were collected on family composition, offsprings feelings regarding the method of their conception, communication within families, donor anonymity and their search for their donors. This investigation focuses on the relationship between family type (single or dual-parent and lesbian or heterosexual parent/s) and offsprings reactions to learning of their DI conception. Results Offspring of lesbian parents learned of their DI origins at earlier ages than offspring of heterosexual parents. In the latter families, disclosure tended to occur earlier in single-parent than in dual-parent families. Disclosure was most likely to be confusing to offspring of heterosexual parents, particularly when it occurred at an older age. The vast majority of offspring in all types of families desired contact with their donor; however, comfort in expressing curiosity regarding ones donor was lowest in dual-parent heterosexual families, with about one-quarter reporting an inability to discuss their origins with their social father. Conclusions Although the findings are not based on a random sample, the desire among offspring surveyed here is for greater openness and contact with their donor. A variety of strategies are needed for offspring of heterosexual couples to benefit optimally from the general trend toward openness in gamete donation. © 2011 The Author.


Daniels K.R.,University of Canterbury | Kramer W.,Donor Sibling Registry | Perez-Y-Perez M.V.,University of Canterbury
Reproductive BioMedicine Online | Year: 2012

This study investigates the motivations, views and experiences of semen donors willing to have contact with their offspring. An online questionnaire for semen donors was posted by the US-based Donor Sibling Registry in 2009. A total of 164 respondents who had previously been donors completed the questionnaire, which consisted of 45 open and closed questions covering motivations for donating, health and medical information, experiences of donating, contact with offspring and implications of donating and contact for their families. The donors' primary motivation was to help other families, although payment was also a factor. Almost all donors were open to contact with their offspring and, where donors were partnered, three-quarters of the partners also supported possible contact. Almost one-third, however, had reservations about contact or were opposed. Two-thirds of donors' own children were interested in meeting the offspring. Contact between a donor and his offspring is often seen as a coming together of these two people only. The results of this study suggest that there are important ramifications for both of the families who become linked. Understanding gamete donation in this broader family context is crucial to the contribution that health professionals can make in this area. © 2012, Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.


Jadva V.,University of Cambridge | Freeman T.,University of Cambridge | Kramer W.,Donor Sibling Registry | Golombok S.,University of Cambridge
Reproductive BioMedicine Online | Year: 2010

This study investigates a new phenomenon whereby individuals conceived by donor insemination are searching for and contacting their donor and/or 'donor siblings' (i.e. donor offspring conceived by the same donor who are their genetic half siblings). On-line questionnaires were completed by members of the Donor Sibling Registry (DSR), a US-based registry that facilitates contact between donor conception families who share the same donor. Of the 165 donor offspring who completed the survey, 15% were searching for their donor siblings, 13% were searching for their donor, and 64% were searching for both. Differences were found according to family type and age of disclosure. Fewer offspring from heterosexual couple families had told their father about their search when compared with offspring from lesbian couple families who had told their co-parent. Offspring who had found out about their conception after age 18 were more likely to be searching for medical reasons, whereas those who had found out before age 18 tended to be searching out of curiosity. Some offspring had discovered large numbers of half siblings (maximum = 13). The majority of offspring who had found their donor relations reported positive experiences and remained in regular contact with them. © 2010, Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.


Stephenson J.,University of Huddersfield | Blyth E.,University of Huddersfield | Kramer W.,Donor Sibling Registry | Schneider J.,Arizona Community Physicians
Asian Pacific Journal of Reproduction | Year: 2012

Objective: To ascertain the perspectives of parents of children conceived via oocyte donation regarding donor anonymity and disclosure of the nature of their conception to their children. Methods: Information was gathered by means of an anonymous online survey initiated by the Donor Sibling Registry, in which 108 parents with 143 children conceived following oocyte donation and aged between one year and 15 years participated. Results: Parental use of an anonymous or open-identity donor-and regardless of parental choice of donor-makes very little difference to the timing of parental disclosure to their donor-conceived child about their conception. The median age of children at disclosure is about 3.5 years; UK/Australian parents seem more ready to tell their children at an early stage (median age around two years) than North American parents (median age around 4.5 years), although about three quarters of all children have been told by the age of six years. Considerable ambiguity among parents who intend to disclose to their children as to the optimal age of disclosure is evidenced. Conclusions: Parents' experiences of disclosure to children at different ages need to be more thoroughly examined in order to establish a coherent body of knowledge that may facilitate improved evidence-based parental decision making. © 2012 Hainan Medical College.


Sawyer N.,University of Ballarat | Blyth E.,University of Huddersfield | Kramer W.,Donor Sibling Registry | Frith L.,University of Liverpool
Reproductive BioMedicine Online | Year: 2013

This paper reports the results of an online survey of 1700 recipients of donor spermatozoa conducted by the Donor Sibling Registry, aiming to understand the perspectives of respondents who had used donor spermatozoa. The survey examined: choice of sperm bank and donor; reporting of births and genetic disorders; disclosure; contact with donor and half-siblings; regulation of sperm donor activity and genetic testing; and access to medical information. The respondents formed three groups: single women; women in a same-sex relationship; and women in a heterosexual relationship. Some differences between the three cohorts were observed: preinsemination counselling; acceptance of donors without medical records or with chronic or late-onset diseases; awareness of choice of bank and type of donor; and views on the right of offspring to know their genetic origins. However, important areas of common ground were identified: the wish by those who had used an anonymous donor that they had used an open-identity donor; support for, and willingness to pay for, comprehensive genetic testing of donors; and desire for access to their donor's family health information. The implications of these results for policies concerning the use and management of donor spermatozoa will be discussed. © 2013, Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.


Frith L.,University of Liverpool | Sawyer N.,University of Ballarat | Kramer W.,Donor Sibling Registry
Reproductive BioMedicine Online | Year: 2012

There has been little research on the views and experiences of non-biological parents of sperm donor children. This paper reports the results of a survey of non-biological mothers and fathers. An online survey was designed and conducted by the Donor Sibling Registry, a US-based non-profit organization that supports those who have used donor conception. A total of 244 people responded (199 non-biological mothers and 45 non-biological fathers). The survey aimed to understand the perspectives of the respondents who had used donor spermatozoa within heterosexual or same-sex relationships, by exploring their views on a number of key issues. Certain issues and concerns associated with not being genetically related to their offspring were experienced differently by men and women. However, there were many important areas of common ground: a concern for getting a healthy donor, the importance of matching the donor to the non-biological partner, and the amount of thought that went into selecting the donor. The implications of these results for policies concerning donor spermatozoa are discussed. There has been little research on the views and experiences of non-biological parents of sperm donor children born from assisted conception. This paper reports the results of a survey of 244 non-biological mothers and fathers. An online survey designed by the Donor Sibling Registry, a US-based non-profit organization that supports those who have used donor conception, was conducted. Two hundred and forty four people responded (199 non-biological mothers and 45 non-biological fathers). The survey aimed to understand the perspectives of these parents within heterosexual and same-sex relationships who had used donor insemination in greater depth by exploring their views on a number of key issues. Certain issues and concerns that related to not being genetically related to their offspring were experienced differently by the men and women. However, there were many important areas of common ground: a concern for getting a healthy donor, the importance of matching the donor to the non-biological partner and the amount of thought that went into selecting the donor. The implications of these results for policies concerning donor insemination will be discussed. © 2012, Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.


Blyth E.,University of Huddersfield | Kramer W.,Donor Sibling Registry | Schneider J.,Arizona Community Physicians
Reproductive BioMedicine Online | Year: 2013

This paper reports on and discusses the findings of an online survey initiated by the Donor Sibling Registry of 108 parents of children conceived following oocyte donation. Respondents generally supported early disclosure of donor conception to the child, although some bias in favour of disclosure cannot be excluded, given the recruitment source. Even so, extensive uncertainty regarding the optimum time for disclosure was evident. Around half of the parents who had either expressly chosen (50.0%), or had been given no choice of, an anonymous donor (54.1%) subsequently wished they had used an open-identity donor. A total of 87% of respondents showed interest in identifying and making contact with their donor and with other families containing children sharing the same donor, and 19% had already made such contact. The survey revealed considerable variations in respondents' experiences of clinic practices regarding the availability of counselling, information provided about choice of donor type, advice regarding disclosure and the reporting of births, indicating keys areas for improved professional practice. This paper reports on and discusses the findings of an online survey initiated by the Donor Sibling Registry of 108 parents of children conceived following ooctye donation. Respondents generally supported early disclosure of donor conception to the child, although extensive uncertainty regarding the optimum time for disclosure was evident. Around half of the parents who had either expressly chosen, or had been given no choice of, an anonymous donor subsequently wished they had used an open identity donor. A number of respondents showed interest in identifying and making contact with their donor and with other families containing children sharing the same donor, and a minority had already made such contact. The survey revealed considerable variations in respondents' experiences of clinic practices regarding the availability of counselling, information provided about choice of donor type, advice regarding disclosure and the reporting of births, indicating keys areas for improved professional practice. © 2012, Reproductive Healthcare Ltd. Published by Elsevier Ltd. All rights reserved.


Jadva V.,University of Cambridge | Freeman T.,University of Cambridge | Kramer W.,Donor Sibling Registry | Golombok S.,University of Cambridge
Human Reproduction | Year: 2011

Background: This study examined the motivations and experiences of anonymous donors who decide to make themselves open to contact with their donor offspring. Methods Online questionnaires were completed by 63 sperm donors and 11 oocyte donors recruited via the Donor Sibling Registry (http://www. donorsiblingregistry.com/), a US-based international registry that facilitates contact between donor-conceived offspring and their donors. Results Donors main reasons for donating were financial payment and wanting to help others. Sperm donors had donated between 1 and 950 times (median 100) and oocyte donors had donated between 1 and 5 times (median 2). The majority of sperm donors and more than one-third of oocyte donors expressed concerns about having donated. These concerns were mainly about the well-being of any children conceived using their gametes and not being able to make contact with them. Most sperm and oocyte donors felt that it was important to know how many offspring had been born using their donation, and 51 of sperm donors and 46 of oocyte donors wanted identifying information. All of the donors who had contact with their donor offspring reported positive experiences and the majority continued to have regular contact. Conclusions Although the sample may not be representative of all anonymous donors, this study highlights the importance of donors having access to information about their donor offspring and the positive consequences that may arise when contact is made. © 2011 The Author.

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