A DNA kit and a genetic identity shift: Interview with Alesia Cohen Weiss of Right to Know

17 Jun A DNA kit and a genetic identity shift: Interview with Alesia Cohen Weiss of Right to Know

Home DNA testing has become a pretty common practice as people explore family genetics. According to a study at MIT, the DNA market is projected to double in 2021—for the 5th year in a row – which could mean over 90 million tests sold.

Family Secrets Uncovered

The surge in purchases of DNA tests has also caused family secrets about parentage to be revealed more often. Finding out that one or both of your parents are not a genetic match to you is known as a Misattributed Parentage Experience (MPE).

Recently, I had the privilege of talking to Alesia Cohen Weiss by phone from her home in the Seattle area. She was generous with her fascinating story and the impact of a misattributed parentage experience (MPE).

Alesia is a retired RN, Army Veteran, blog writer, parent, and co-founder of Right to Know. Alesia purchased an over-the-counter DNA kit in 2014. When Alesia received her DNA results online, she was shaken to her core.

The man who raised her was not her genetic father. The discovery that your parental genealogy is different due to event like an undisclosed adoption, assisted conception, or a parental affair is life changing.

Alesia reported that the results caused her heart to race, she felt nauseous, and had a sense of falling. Both her body and mind were reeling.

It took Alesia four years of sleuthing to discover the identity of her biological father. Tragically, by the time she discovered his identity, he had passed away. Grief on top of grief.

Misattributed Parentage Experience

While Alesia found out that her father was not her genetic father in 2014, it was not until 2017, with the help of a search angel, that she was able to get close enough family matches on the DNA site to make connections.

Alesia was surprised to find that when she reached out to new family members, some were welcoming and some put up walls, refusing to speak with her. She had expected nothing but a welcoming and excited attitude. The rejection she experienced was hurtful.

Meeting family answered her life-long question, “Why am I so different?” She was raised in a conservative, Christian family. Her paternal family is Russian and Latvian and a further surprise was that they’re Jewish. During WWII, there were family members that died in the Holocaust.

She found that they shared her values on social justice and acceptance. Alesia explained that her experience of finding like-minded family brought her clarity. “That’s why I am the way I am. I feel like I have been able to really come out of my shell. I am able to be myself.”

Although Alesia’s mother prefers privacy for herself, she has continued to assure Alesia that “this is your story to tell.” Her mother describes Alesia as always having been a “truth seeker.”

During the discovery and search period, she was also recovering from a brain tumor. Her recovery included learning to walk and talk again. It turns out that four other paternal family members had brain tumors as well. Had she known she had a genetic predisposition, her doctors probably could’ve diagnosed her tumor much sooner.

Access to medical history is another reason why she is so passionate about helping change the laws that keep vital information from people who are part of the MPE community; donor conceived, adoptees, or individuals with a non-paternity event.

Right to Know

Alesia and Kara Rubinstein Deyerin, a non-practicing attorney, co-founded Right to Know. Both have a MPE history. They are a wonderful blend of big picture and detail orientation. Alesia has a mental health lens while Kara has the legal lens. Together, a great vision was created.

Right To Know is a nonprofit that advocates for people whose genetic parent(s) is not their supportive or legal parent(s) through education, legislation, and mental health initiatives to promote understanding of the complex intersection of genetic information, identity, and family dynamics.

The Right to Know website states that there should be no shame in knowing your genetic heritage. I 100% agree with this statement both as a therapist who works with people who were adopted and as an adopted person myself.

Alesia shared, “Everyone feels better when they know and share their story.”

MPE Therapist Directory

The Right to Know volunteer group is actively working on a training program for therapists. They hope to have training ready by fall. Currently, there is a vibrant webinar series offered to the community monthly.

The impetus for developing the program was feedback from the MPE community. Many reported seeking therapeutic support and hearing, “I’ve never worked with this before,” from therapists.

For that reason, the therapist directory was created. The directory is largely made up of psychotherapists with a MPE background and/or that have a specialty working with members of the adoption constellation.

On the website there is a list of FB support groups. “The power of human connection is a lifeline for many,” Alesia said.

Alesia described the support needs at the time of a MPE discovery as identity exploration and grief work. She used Elisabeth Kübler-Ross‘s stages of grief (denial, bargaining, anger, depression, acceptance, and meaning) as a description. She also identified some common thoughts and feelings that she consistently hears in the community.

Common MPE Thoughts & Feelings

• It is always on the mind. There is not a day that I don’t think about it.
• How will I ever heal?
• Who am I?
• How do I search?
• Who am I allowed to tell?
• I must protect my parent’s feelings over my own.
• Loss of culture – both the one you had and the one you didn’t get to have.
• Shock
• Anger
• Betrayal
• Depression
• Genealogical bewilderment, confusion in general.

As we enter into the growing world of DNA testing, secrets and anonymity will fail to exist. In the meantime, organizations like Right to Know help people navigate the disorienting shift of identity that occurs in a misattributed parentage experience.

At the end of our call, Alesia shared a metaphor that she uses to explain finding out that a large secret has been held from you about your parentage -intentionally or unintentionally. The experience is like Lake Washington, a favorite of her family’s, on a stormy day. When the lake is calm, it’s like glass. You can float around and think. On a stormy day, you are hit with wave after wave and the current is strong. It is hard to get your bearings and chart a course, let alone reflect and think.

Alesia thrives on offering people support when the waves of emotion and the current of their lives are overwhelming. Right to Know offers a course that seeks to give the MPE community direction and resources to process their experience along with hope that in time they will have space to reflect and move forward.

Kate Murphy, LCSW

Kate Murphy, a therapist in Chamblee, GA, specializes in helping you decrease stress and anxiety. You can live a more balanced, connected, and meaningful life. Kate works with individuals and couples over the age of 18 to support healing, communicating, and experiencing joy more often. Personally and professionally she is part of the adoptee and LGBTQ community. Licensed in GA & FL.