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Embarrassment

Secrecy v. Privacy in Donor Conception Families

Walking the fine line between privacy and secrecy is inherent in donor families.

Key points

  • Privacy is the choice to not be seen, while secrecy is based in fear, shame, or embarrassment.
  • Privacy involves setting comfortable and healthy boundaries.
  • Carrying a family secret is a heavy burden.
  • Donor families based in honesty and transparency have more meaningful and deep relationships.
kchung@123rf
Secrecy
Source: kchung@123rf

A secret kept is usually based in shame or fear: we’re embarrassed or afraid of what people will think if it is divulged. Secrets can harm others if they were to find out about them. On the other hand, we all have a right to our own privacy, and honoring another’s right to privacy demonstrates respect and illustrates trust. Recognizing the difference between privacy and secrecy is critical for all members of the donor family.

Secrecy Remains in Donor Conception

Withholding information for fear of the consequences likely implies secrecy. Secrets require a lot of emotional energy and are a heavy burden to carry. Secrecy undermines trust and is therefore harmful to relationships, while privacy, including creating healthy boundaries is usually beneficial.

Although the ideas of openness have increased, gamete vendors and doctors still encourage secrecy, thinly veiled as privacy and promoted as in the best interests of all donor family members. Parents have been routinely advised not to disclose to friends, family, or even the child about the use of donated gametes and the stigma of infertility is still very present in society. Because secrecy often implies shame, this secrecy is often transmitted to the child as shame about their own origins.

Additionally, secrecy is also illustrated in a gamete vendor’s lack of transparency regarding a lack of adequate education and counseling of donors and parents, shoddy record keeping, rarely updating or sharing medical information amongst families, infrequent donor medical follow-ups, a dearth of information on the children born from donors, and other vital information.

kchung@123rf
Privacy
Source: kchung@123rf

Finding the balance between being transparent, open, and honest, while preserving our own and others’ right to personal privacy, can be tricky but is essential for creating healthy and happy donor families.

Often, what is called "privacy" is thinly veiled secrecy. Too many parents and donors (and even donor-conceived people) hide behind "privacy" in order to defend and safeguard their shame-based secret. Shame about selling one’s gametes, shame about infertility, shame about not having a partner, shame about using a donor, or even shame about being donor-conceived.

Parents

Privacy/secrecy issues and the desire to hide the use of a donor. Keeping such a big secret from everyone is a lot of work and can be exhausting.

Parents sometimes use privacy to defend their wanting to keep their kids from close genetic relatives until they are older. But, we don’t wait for our kids to become adults before they meet their grandparents or cousins. So why would we think it’s OK to keep our donor children from their close genetic relatives for 18 or more years, or until they ask about them? What makes parents so willing to believe what the reproductive medicine industry tells them about the merits of keeping their children from their close genetic relatives?

For Single Mothers by Choice: There can be shame, embarrassment, guilt, and fear around nontraditional parenthood or not finding a spouse.

For Infertile Couples: It is very common for the non-biological parent to request that their partner and/or other family members keep the secret. This is often based on the desire to hide the shame of infertility and the desire to hide the use of a donor. Parents who were initially dealing with the shame and grief of infertility, and the loss of their dream of the perfect family where their children were genetically related to both parents, haven’t yet worked through these emotions. Keeping donor conception a secret and using “privacy” as the excuse, can create a fault line in the family’s foundation.

When donor-conceived people (DCP) in heterosexual families are told, or more commonly, find out the truth, their parents sometimes insist that they too keep the secret, or won’t speak about it. In these situations, unfortunately, the shame of infertility is passed along to the donor-conceived people and can manifest as the shame of donor conception. Parents who feel inadequate or insecure about their parenting (or themselves) are more likely to pass along these sentiments. These parents are not providing the support that their children need to process their emotions and feelings. This can make it much more difficult for the DCP to accept and process the circumstances of their conception, forgive their parents and mend those relationships, allow themselves to be curious, and consider searching for and connecting with their unknown genetic family.

Parents can recognize the negative implications of asking children to keep the “secret”. Secrecy can imply shame and/or guilt. This is a burden that should not be not passed along.

Donor-Conceived People

It's not uncommon for DCP who were not told the truth to grow up feeling that there was something being withheld from them. Many report that when they asked their parents if they were adopted, if a parent had an affair, or even if they were donor-conceived, their parents gaslit them with their denials. For many, working through the anger at the secrecy and subsequent denials takes work, understanding why the secret was so closely guarded, compassion, and forgiveness.

Having to keep the identity of their biological parent/donor or “private” half-siblings from other half-siblings.

Many who are aware of their status have little opportunity to talk about it to others who understand, and they may not have the language to speak about their experience, thus continuing to keep it secret.

There can be challenges with re-defining family, setting boundaries, and navigating privacy/secrecy as they consider incorporating new donor relatives into their family circle. This can be even more challenging if siblings they've been raised with feel differently about connecting with donor relatives.

Many donor-conceived people find out the truth later in life, (eg. via a DNA test) and keep their knowledge of the truth a secret, afraid of telling their parents about their discovery. Many are afraid that their non-biological parent would feel betrayed if they expressed any curiosity about their donor family.

Parents and DCP

Is contacting a donor and giving them the opportunity to connect an invasion of their privacy or an invitation?

Connecting with a donor and not immediately or eventually revealing the (large) number of known offspring.

Connecting with a donor and not telling the other known half-sibling families that contact was made.

Either personally deciding or agreeing to keep a donor's or known half-sibling’s identities, photos, and medical information from the other known half-sibling families.

If they figure out who their (or their child's) donor is, and contact is refused, deciding whether to contact the donor's other relatives (eg. their own or their child's biological grandparents or children): is it an issue of privacy or secrecy?

Sperm, Egg, and Embryo Donors and Their Families

Not telling family (or friends) that they donated or that they have donor children.

Keeping found donor children’s identities from their own family members or other half-sibling families they’ve also connected with.

Tying to protect their family’s privacy while removing the veil of secrecy between them and their progeny can be stressful as they try to balance the needs of everyone affected.

There can be difficulties in understanding and communicating their own comfort levels and privacy boundaries.

Donors' partners can have difficulty understanding and communicating their own comfort levels and privacy boundaries, for themselves and for their children.

Donors' parents and children might be very interested in knowing their genetic half-siblings and grandchildren, but their sons/daughters/mothers/fathers might feel differently.

Many donors who were promised (or forced into) anonymity when they sold their gametes do desire to connect with the children they helped to create. The sperm and egg facilities quite often will not share the donor's contact information with donor-conceived people and their families and work very hard to keep the donor's identities secret. These facilities often use the excuse of donor and parent "privacy" even when donors have made it clear that they would be open to mutual consent contact.

Parents and Donors

Secrecy is abolished when parents and donors can connect on the Donor Sibling Registry right from pregnancy/birth while remaining private to each other if wished. This empowers all parties and fosters openness and honesty and allows for the sharing of information between families without the need for a middleman who might be invested in secrecy because of liability or financial concerns.

All Donor Family Members

Maneuvering through their own and other family members’ privacy boundaries.

If sharing your own or your child's donor story publicly, either via the media or on social media platforms, deciding how much of the story to keep private can be tricky.

When when connecting on DNA sites to genetic donor relatives: how to disclose the donor relationship to people who may be utterly confused about the close genetic connection? If privacy is respecting a person's right to not be seen, how does one apply that respect to a donor's relatives who have not yet made that choice?

Challenges with re-defining family, setting boundaries, and navigating privacy/secrecy as they consider incorporating new relatives into their family circle.

Withholding important and relevant health information about oneself or keeping secret other genetic relatives from each other.

When we carry a secret from a loved one, we have to be careful about what we say and to whom to avoid divulging information that we believe might cause us harm.

Secrecy builds invisible walls in relationships. The person being kept from the secret is clueless about the disconnect within the relationship and can blame themselves.

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