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• Access to Genetic Identity from Birth Is in the Best Interest of a Child and is Not "Bionormative"
  Kara J Rubinstein Deyerin
  Published on: 24 May 2023
• Why an Age Restriction Doesn't Work
  Hilary C Bertisch
  Published on: 23 May 2023
• Ride the horse in the direction its going.
  Wendy Kramer
  Published on: 19 May 2023

• Published on: 24 May 2023

  Access to Genetic Identity from Birth Is in the Best Interest of a Child and is Not "Bionormative"

  • Kara J Rubinstein Deyerin, CEO Right to Know

  In the U.S. a parent has a fundamental right to raise their child as they see fit, but this not an absolute right. Parents must act in the best interest of their child. The right to know your genetic identity is supported by ethical principles and existing legal frameworks. Denying individuals access to their genetic information violates their autonomy, privacy, and dignity. Lack of access to genetic identity information from birth also significantly increases the likelihood of physical and mental health issues.

  Medical history and genetic makeup play an essential role in identifying health risk factors. An accurate medical history provides relevant information to the genetic information stored in our DNA. Family health history is a significant factor in determining the likelihood of developing certain diseases we carry in our DNA. Family medical history includes the types of health conditions family members have been diagnosed with, age of diagnosis, and relevant environmental or lifestyle factors. Common health conditions often included in a family medical history are heart disease, cancer, stroke, diabetes, high blood pressure, and mental health disorders.

  A thorough understanding of medical history can help identify early signs of conditions that may otherwise go undetected. People base their health habits on their parents’ medical history which could, if incorrect, lead to medical conditions that might have been prevented, delays in diagnosis, or unnece...

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  In the U.S. a parent has a fundamental right to raise their child as they see fit, but this not an absolute right. Parents must act in the best interest of their child. The right to know your genetic identity is supported by ethical principles and existing legal frameworks. Denying individuals access to their genetic information violates their autonomy, privacy, and dignity. Lack of access to genetic identity information from birth also significantly increases the likelihood of physical and mental health issues.

  Medical history and genetic makeup play an essential role in identifying health risk factors. An accurate medical history provides relevant information to the genetic information stored in our DNA. Family health history is a significant factor in determining the likelihood of developing certain diseases we carry in our DNA. Family medical history includes the types of health conditions family members have been diagnosed with, age of diagnosis, and relevant environmental or lifestyle factors. Common health conditions often included in a family medical history are heart disease, cancer, stroke, diabetes, high blood pressure, and mental health disorders.

  A thorough understanding of medical history can help identify early signs of conditions that may otherwise go undetected. People base their health habits on their parents’ medical history which could, if incorrect, lead to medical conditions that might have been prevented, delays in diagnosis, or unnecessary medical procedures. Slow diagnosis due to lack of information may lead to death or long term health problems that could have been avoided. Unnecessary procedures, office visits, and surgeries may be performed due to lack of an accurate medical history.
  Knowing your genetic identity plays a role in your sense of connection to the past and cultural heritage and helps people understand and embrace their unique identity and place in the world. The development of a sense of self is influenced by genetic makeup, family dynamics, culture, peer relationships, and life experiences.

  A key challenge for someone being raised in non-genetic families, even if it is only one parent, can be on the development of their self-concept. As someone grows and develops, individuals often look to their family for cues about their identity, including physical traits, personality characteristics, and values. For those not genetically related to their family, these cues are not available, leading to a sense of disconnection or confusion about identity. “Genetic bewilderment” is a term coined by geneticist Richard Lewontin and is the feeling of “otherness” rooted in a break in the continuity of genetic heritage. Essentially a personal sense of security and belonging to the family group is undermined which affects development. Individuals in these instances often blame themselves for this lack of genetic mirroring resulting in potential self-esteem issues, insecurity, and genetic bewilderment.

  Parents are not acting in the best interest of their child when they choose not to tell their child they are donor conceived. Infertility is a deeply distressing experience that can cause intense feelings of loss, grief, and shame. The emotional intensity of infertility trauma may lead to the parent unconsciously dissociating from the child’s origins as a coping mechanism. The child’s origin is buried so deep in the parent’s subconscious, they no longer remember the truth.

  Avni, Chen et al. "Discovering Your Presumed Father Is Not Your Biological Father: Psychiatric Ramifications of Independently Uncovered Non-Paternity Events Resulting from Direct-to-Consumer DNA Testing." Psychiatry Research, vol. 323, 2023.

  Klugman-Rabb, Jodi. “A Qualitative Study on the Effect of Misattributed Parentage Experiences.” Dissertation, Touro University Worldwide, 2023.

  Lawton, Bessie et al. “Experiences of Misattributed Parentage Communities: Impacts of Discovering New Familial Kinships.” Journal of Family History, vol. 46, no. 2, 2021, pp. 117-136.

  Lewontin, Richard. "The Triple Helix: Gene, Organism, and Environment." Harvard University Press, 2001.

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  Conflict of Interest:
  None declared.

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• Published on: 23 May 2023

  Why an Age Restriction Doesn't Work

  • Hilary C Bertisch, Psychologist N/A

  I thank Dr. Pennings for his thoughtful work. There are, however, further critical points to be considered when designating any arbitrary age by which a donor conceived person (DCP) can learn the identity of his/her donor. Although I agree that outcome research needs to be conducted on DCP stratified by the age at which they specifically learn their donors identities, the existing research on adoption, which parallels many of the ethical and humanistic aspects of donor conception, largely supports the idea of open adoption, where all parties are knowledgeable of the others at birth. According to one recent review, contact with the birth family results in substantially more positive outcomes for adoptees (Smith et al, 2020). Research has also shown significantly greater benefit for the adoptive parents and birth mothers in terms of satisfaction with the adoption process and post-partum adjustment in open adoption (Ge et al, 2008). This study also indicates positive experience in the new kinds of relationships created through open adoption, and the authors extend the implications of their findings to reproductive technologies such as donor conception as well.

  The practicalities of enforcement of a designated age where DCPs might be permitted to learn their donor's identities also must be addressed. DCPs learning the identity of their donor through commercial DNA testing prior to the designated age is only one consideration. A second ethical dilemma would b...

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  I thank Dr. Pennings for his thoughtful work. There are, however, further critical points to be considered when designating any arbitrary age by which a donor conceived person (DCP) can learn the identity of his/her donor. Although I agree that outcome research needs to be conducted on DCP stratified by the age at which they specifically learn their donors identities, the existing research on adoption, which parallels many of the ethical and humanistic aspects of donor conception, largely supports the idea of open adoption, where all parties are knowledgeable of the others at birth. According to one recent review, contact with the birth family results in substantially more positive outcomes for adoptees (Smith et al, 2020). Research has also shown significantly greater benefit for the adoptive parents and birth mothers in terms of satisfaction with the adoption process and post-partum adjustment in open adoption (Ge et al, 2008). This study also indicates positive experience in the new kinds of relationships created through open adoption, and the authors extend the implications of their findings to reproductive technologies such as donor conception as well.

  The practicalities of enforcement of a designated age where DCPs might be permitted to learn their donor's identities also must be addressed. DCPs learning the identity of their donor through commercial DNA testing prior to the designated age is only one consideration. A second ethical dilemma would be that in groups of donor siblings with large age ranges, the older members would inevitably have the "right" to learn the donor identity first, and the expectation that they will then withhold this information from the younger siblings, sometimes for many years or decades, cannot be regulated.

  As has been the trend in adoption, the existing empirical and anecdotal knowledge base, the growing recognition of the need for research on donor identity and related topics in donor conception, and available tools such as DNA testing are unquestionably leading the field of third party reproduction towards one of uniform openness. As both a psychologist and a DCP, it is my hope and expectation that the openness will substantially enhance the process and outcomes for all individuals associated with donor families as we have seen in open adoption.

  References

  Ge, X., Natsuaki, M. N., Martin, D. M., Leve, L. D., Neiderhiser, J. M., Shaw, D. S., Villareal, G., Scaramella, L., Reid, J. B., & Reiss, D. (2008). Bridging the divide: Openness in adoption and postadoption psychosocial adjustment among birth and adoptive parents. Journal of Family Psychology, 22(4), 529- 540. https://doi.org/10.1037/a0012817

  Smith, M., Gonzalez-Pasarin, L., Salas, M. D. & Bernedo, I. M. (2020). Review of benefits and risks for children in open adoption arrangements. Child & Family Social Work, 25, 761-774, doi: 10.1111/cfs.12753

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  Conflict of Interest:
  None declared.

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• Published on: 19 May 2023

  Ride the horse in the direction its going.

  • Wendy Kramer, Director, author, researcher Donor Sibling Registry

  There seems to be a disconnect between Dr. Pennings and the decades of reporting of actual experiences of parents, donors and donor-conceived people.

  The first argument is that there is no evidence that a change in age will increase the total well-being of donor offspring as a group. 

  There is plenty of published research and years of anecdotal evidence. We invite Dr. Pennings to read not only the research, (https://indd.adobe.com/view/ac2a0b99-f67a-4768-bf8c-c48af5aeebaf) but also the reported experiences of more than 86,000 over the past 22 years on the www.DonorSiblingRegistry.com website. Many thousands of these donor-conceived people (DCP) have connected with their biological parent (donor) long before the age of 18.  Many more DCP have made their stories public in hopes of shining a light on the innate human desire to know who and where we come from. Many formerly anonymous egg and sperm donors who have connected with donor children have participated in research and have also made their stories public.  Additionally, several dozen egg clinics, agencies, and lawyers have been writing the Donor Sibling Registry into their parent-donor agreements for many years, connecting donors and parents right from pregnancy/birth. This is an extremely popular and successful program empowering donors and parents to decide the depth, breadth,...

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  There seems to be a disconnect between Dr. Pennings and the decades of reporting of actual experiences of parents, donors and donor-conceived people.

  The first argument is that there is no evidence that a change in age will increase the total well-being of donor offspring as a group. 

  There is plenty of published research and years of anecdotal evidence. We invite Dr. Pennings to read not only the research, (https://indd.adobe.com/view/ac2a0b99-f67a-4768-bf8c-c48af5aeebaf) but also the reported experiences of more than 86,000 over the past 22 years on the www.DonorSiblingRegistry.com website. Many thousands of these donor-conceived people (DCP) have connected with their biological parent (donor) long before the age of 18.  Many more DCP have made their stories public in hopes of shining a light on the innate human desire to know who and where we come from. Many formerly anonymous egg and sperm donors who have connected with donor children have participated in research and have also made their stories public.  Additionally, several dozen egg clinics, agencies, and lawyers have been writing the Donor Sibling Registry into their parent-donor agreements for many years, connecting donors and parents right from pregnancy/birth. This is an extremely popular and successful program empowering donors and parents to decide the depth, breadth, and timing of their own relationships. Openness, honesty, and transparency is the future of the gamete donation industry.

  Several hundred experiences of donor-conceived people connecting with half-siblings and biological parents can be read on the Success Story page: https://donorsiblingregistry.com/success_stories

  Nowhere on the planet, or at any time in history has it been medically or psychologically accepted practice to deliberately keep a person from their ancestry, medical family history, or close genetic relatives for the first 5, 10, or 18 years of life.

  The second argument stresses that the rights language used for the donor-conceived child isolates the child from his or her family and this is unlikely to be in the best interest of the child. 

  Completely false. Connecting with one’s donor relatives in no way isolates them from the family they’ve grown up with. Connecting with donor family: half-siblings or biological parents is expanding family. It is an "adding to", not a "taking away" or diminishing one's current family system. More than 24,000 donor-conceived people have made these connections on the Donor Sibling Registry.

  Finally, lowering the age limit reintroduces the genetic father in the family and expresses the bionormative ideology that contradicts gamete donation as a practice. 

  Gamete donation is utilized because of the importance of biology. Parents want, and acknowledge the importance of that genetic link, usually with one parent. You can not acknowledge the importance of the genetic connection of one biological parent while denying the importance of knowing the other genetic parent, ancestry, and medical family history. DNA is not the only way to make a family, but the adoption world and now the world of donor conception have taught us that it is certainly one way to define family. Many thousands of adopted people and donor-conceived people feel very strongly about knowing their DNA relatives. Tho them, it's isn't just a "donated cell" or a "piece of genetic material". It's one half of their identity.

  Anonymity has not been possible for 18 years. Why continue to have conversations around mandated anonymity when it's been an antiquated idea and practice since 2005? Why not listen to us, the donor families? Why not ride the horse in the direction it's going?

  Wendy Kramer
  wendy@donorsiblingregistry.com
  Parent to a donor-conceived son
  Director and Co-founder, the Donor Sibling Registry
  S.P.E.R.M. The Society for the Promotion of Ethics in Reproductive Medicine

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  Conflict of Interest:
  None declared.

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