You, 23andme: An Update

Posted on December 2, 2013 by Maureen McCauley

On December 6, 2013, 23andMe posted a notice saying they are suspending health-related genetic tests to comply with the FDA’s regulatory review. People who bought the tests before November 22, 2013, will still have access to their results. 23andMe hopes to offer health-related results in the future. The ancestry-related genetic tests and raw genetic data will still be available now. Click here for the complete notice.

On one level, the many genetic testing and ancestry services that currently exist are amazing and are opening incredible doors. For a good overview of Genomic Testing from the Centers for Disease Control and Prevention, click here.

On another level, the first solution should be access to original birth certificates (OBCs) that would allow adopted people the basic civil right to know their own histories. (I’ve written about the need for OBC access here.)

Until our legislators come to their senses and allow adoptees this basic human right, genetic technology at least sheds some light on otherwise dark corners.

I’ve written several times about DNA testing and its value to adoptees, first/birth parents, and others who have gaps in their histories. You can read “DNA, Pandora’s Box, and Answers?”, “DNA Testing, Adoption, and Outrage,” and DNA Testing and Adoption: Filling In Many Missing Pieces.”

One of the most popular services, 23andme, provides a range of services related to genetics. As the website says, you can discover your ancestral origins and trace your lineage and find out what percentage of your DNA comes from populations around the world (East Asian, sub-Saharan African, British Isles, etc.). There is a family tree tool that allows connection with genetically-related relatives, and some astonishing connections among first/birth families have been made that way.

23andMe also allows you to find out inherited traits (such as lactose intolerance and male pattern baldness), carrier status of certain diseases (for example, cancer), health risks, and drug responses. It doesn’t include all diseases or all health risks, but it does provide some substantial information.

As a result of the genetic health testing service, 23andMe recently received a warning letter from the Food and Drug Administration.

You can see the complete letter here.

Here is an excerpt:

“The Food and Drug Administration (FDA) is sending you this letter because you are marketing the 23andMe Saliva Collection Kit and Personal Genome Service (PGS) without marketing clearance or approval in violation of the Federal Food, Drug and Cosmetic Act (the FD&C Act)…

(Y)our company’s website at http://www.23andMe.com/health (most recently viewed on November 6, 2013) markets the Personal Genome Service for providing ‘health reports on 254 diseases and conditions,’ including categories such as “carrier status,” “health risks,” and “drug response,” and specifically as a “first step in prevention” that enables users to “take steps toward mitigating serious diseases” such as diabetes, coronary heart disease, and breast cancer. Most of the intended uses for PGS listed on your website, a list that has grown over time, are medical device uses under section 201(h) of the FD&C Act. Most of these uses have not been classified and thus require premarket approval or de novo classification, as FDA has explained to you on numerous occasions.

Some of the uses for which PGS is intended are particularly concerning, such as assessments for BRCA-related genetic risk and drug responses (e.g., warfarin sensitivity, clopidogrel response, and 5-fluorouracil toxicity) because of the potential health consequences that could result from false positive or false negative assessments for high-risk indications such as these. For instance, if the BRCA-related risk assessment for breast or ovarian cancer reports a false positive, it could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist.

…The risk of serious injury or death is known to be high when patients are either non-compliant or not properly dosed; combined with the risk that a direct-to-consumer test result may be used by a patient to self-manage, serious concerns are raised if test results are not adequately understood by patients or if incorrect test results are reported.”

Health literacy is an issue in America, where people fail to follow instructions, misunderstand dosage, or get confused about a diagnosis. I’m sure there is some validity to the FDA’s position, though I also believe that most people who would use 23andMe would also consult with a doctor, who would then order additional tests.

Many 23andMe lawyers have no doubt been working hard in response to the letter. The information on the web page currently is vague:

press release

23andMe Statement Regarding FDA Warning Letter

“We have received the warning letter from the Food and Drug Administration. We recognize that we have not met the FDA’s expectations regarding timeline and communication regarding our submission. Our relationship with the FDA is extremely important to us and we are committed to fully engaging with them to address their concerns.”

A New Yorker article this week notes that “many doctors who want medically relevant genetic information about a patient get that information by asking her to sign up with 23andMe. Meanwhile, this company’s cheap, widespread testing, which has gathered genetic, ancestry, and health data from nearly five hundred thousand people, has created a rich medical source of risk information.”

It’s been a huge source of information for adopted adults and for first/birth families in terms of creating connections, as well as allowing them to fill in previously missing information on medical forms. “Unknown” is no fun to post on a medical history.

At this point, 23andMe is still taking orders for its kits, still posting numerous disclaimers about test results, and still urging consumers to see their doctors. Lawyers are looking into their response to the FDA. A change.org petition has been started. A petition to the White House is up and running. 23andMe has 15 working days from November 22 to respond to the FDA letter.

In addition to 23andMe, here are some other sites to explore and consider:

www.FamilyTreeDNA.com

www.mixedrootsfoundation.org/global-adoptee-genealogy-project

https://genographic.nationalgeographic.com

http://groups.yahoo.com/group/AdoptionDNA

Let’s hope that 23andMe will be allowed to continue safely providing this revolutionary, life-changing service, to those who have few other options of accessing medical information. Let’s hope that other accurate, cost-effective services become available as well.

And let’s continue to work toward adoptees having access to both their original birth certificates and their own medical history.

DNA Test kits from 23andme.com

Rebuilding Personal Histories: The Art of the Journey

Posted on November 13, 2013 by Maureen McCauley

Personal histories are hugely popular. To quote from the Association of Personal Historians: “It could be a memoir, a family biography, an oral history, a legacy letter, or another tribute – and it could take the form of a printed work, a video, an audio recording, or other formats. Whatever form of remembrance you choose, a personal history can have a profound impact on your life and the lives of your loved ones.”

It’s all about telling your stories, weaving together your memories. It’s booming with the baby boomers.

And stories are really important, whether or not we are baby boomers. The stories need to be known, shared, and preserved. Stories matter.

As Maya Angelou said, “There is no greater agony than bearing an untold story inside you.”

Unless, perhaps, it’s not ever having the opportunity, the choice, or the right to know, and then tell, your own story.

Some 5 million Americans are adopted. So that means there are about 10 million birth/first parents out there as well, plus grandparents, siblings who weren’t placed for adoption, and so on. They may not have the basic ingredients for a personal history that the rest of us take for granted. Some of this involves genealogy, as well as genetic genealogy. There are lots of possibilities to locate information, to preserve histories, and to share stories.

I had the pleasure of presenting a workshop at the annual conference of the Association of Personal Historians. (It was a great conference, and an incredibly nice group of people, by the way.) I’ve interspersed a few of my slides here to give a flavor of the workshop.

Adoption and estrangement are not the same thing, of course, but there is overlap: separation from family, disruption of the original family, a disconnect, a loss. This is true for adoptees and for first/birth parents, mothers of loss, siblings who weren’t adopted, and anyone else whose family connections were severed, for whatever combination of reasons.

There is a spectrum of responses to these separations and disconnections. Some people are idly curious about the missing parts of their pasts. Some are consumed to the core. Some had very happy childhoods, Some were severely traumatized. For those seeking to learn and tell their stories, that spectrum can affect the way they approach their search for information and the way they process it.

In my workshop, I talked about a variety of ways that information can be found these days, even with the absurd restrictions on access to original birth certificates. I talked about the Internet, of course, and the remarkable story of Saroo Brierley and his journey from India to Australia and back, via Google Earth. Saroo’s story is not typical, but it does give hope. There are many ways to gather information, and many ways to tell our stories.

I shared information about DNA testing, how that’s enriching our understanding of (and access to) all sorts of information: medical conditions, race/ethnicity, and connections to cousins, maybe even closer relatives. I mentioned search angels, sibling registries, online adoptee/first parent groups, vk.com (the Eastern European Facebook), and more.

We talked in my workshop about ways to normalize the past, to deal with complicated realities, and celebrate complex histories.

As an artist, I also mentioned some less traditional ways of telling one’s stories: through SoulCollage, through The Sketchbook Project, through the book Personal Geographies: Explorations in Mixed-Media Mapmaking, and other means of re-creating one’s past and re-mapping one’s journeys.

Adopted persons and birth/first parents should be able to know their own histories and tell their own stories, without shame, fear, or agitation. The stories can be very complicated. Some are sad and painful. They are our stories nonetheless, and it is possible to acknowledge their pain and not be drowned by it. We can learn from them, and share that wisdom with others. We should absolutely tell the happy, funny, and joyful stories as well, and share them with our loved ones.

Among the participants in my workshop were two US adoptees (one a genome expert), an adoptive mother of a girl from China, and a woman whose 80-year-old mother was adopted and wanted to get information about her origins before she died. Each of these folks had a different perspective on the search and the stories, the pressure of time, the ways to share and tell information. Each has possibilities.

Starting in January, I will take a year-long, online, mixed media course called Life Book 2014. I can’t wait: the focus of the course will be self-development and healing, and each month a new artist will share techniques and ideas. I wrote about it in this post: Adoption Stories in the Light of Day, Through Art and Hopes of Healing. I’m hoping to build on my work with personal histories and with art, to bring more stories into the light of day, where they deserve to be.

I plan to do an online presentation of my workshop, “Adopted and Estranged Families: Rebuilding A Personal History.” I am in the process of developing resources around personal histories for adoptees and first/birth parents. I’ll post details soon on my Upcoming and Ongoing page.

A Basic Civil Right, Still Denied

Posted on June 27, 2013 by Maureen McCauley

It’s been a big week for Supreme Court judgements. We are reminded of old ones, and celebrating new ones: black people and women can vote. Asian people can marry white people, or Asian or black or whatever combo. Gay people can marry other gay people.

Those are significant civil rights victories.

How long will it take until another basic civl right is allowed? The United States continues to acquiesce to an enormous violation of civil rights: denying access to thousands of adopted adults, by refusing them full access to their own birth certificate.

No other group of citizens is denied such a basic right. As of today, only 7 states allow adopted adults to know who they are, and only 3 states allow unrestricted access.

It is way past time to allow adopted adults the right to their birth certificates.

Parents, grandparents, siblings, partners, friends, spouses, everyone: If you’ve been pleased with any of these landmark civil rights decisions, join us in insisting that adopted adults have the right to something the rest of us take for granted: our birth certificates.

Get more information here: Adoptee Rights Coalition

Standards of Practice for Adoptive Parents: It’s Time (Part One)

Posted on June 10, 2013 by Maureen McCauley

On May 21, I presented my workshop titled “Standards of Practice for Adoptive Parents: Ethics, Economics, and Responsibilities” at the annual conference of the Joint Council on International Children’s Services in New York City.

(A few disclaimers and a bit of context: I was the first executive director of JCICS, from 1994 to 2000. I have no connection with them anymore, except insofar as some of the folks from those days are good people and remain good friends. JCICS has changed a lot since I was there, from an umbrella group of international adoption agencies to a more broadly-focused nonprofit for global child welfare issues. I am guessing most of the conference attendees were adoption agency-affiliated, mostly administrative and executive staff. My workshop was a PowerPoint presentation; if anyone wants the slides, I can share them. My plan here in my blog is to share the main points, providing narrative similar to what I provided at the conference.)

There is a perfect storm in adoption right now:

* The number of children being internationally adopted has dropped dramatically, but the number of children needing families remains high.

* Adoption agencies are closing, including those certified by the Council on Accreditation.

* There is an increased volume of adult adoptee voices being heard, and their experiences and insights are becoming better known and respected.

* There is an explosion of Internet postings about fraud in international adoptions.

* There is some assent within the Christian evangelical community–recent big players in the international adoption arena–regarding fraud.

* Increasing numbers of adoptive parents are searching for their internationally adopted children’s first/birth families privately, after adoption, without agency assistance or knowledge, and while their children are little.

* Awareness and connections with birth/first families are increasing.

Given all this, given this perfect storm, where do we begin?

These are, to me, the minimal Standards:

1. Citizenship. All adoptive parents–whether they adopted in 1956 or in June 2013–must ensure that their internationally adopted children are citizens of the United States. It is an ethical outrage that this is even necessary to discuss (again and again, still). Read here for more information.

2. Access to Original Birth Certificate. All adoptive parents should make every effort for their children to have access to their original birth certificate. Whether a child is adopted within the US or internationally, they should have access to their original birth certificates. I realize that this is difficult (if not impossible) for genuinely abandoned children. Some children don’t arrive in the US with birth certificates because their birth was not recorded in any official way. Many children however do have birth certificates. Still. All of them deserve access to this basic, too-often-taken-for-granted legal information: the birth certificate that non-adopted people have, that provides them with basic, vital information about who they are. It’s a human right.

3. DNA Testing. All adoptive parents should be aware of options regarding DNA testing, and offer these options to their children. DNA testing is relatively cheap these days, and provides an astonishing amount of information. Most non-adopted people have a decent medical history, a good sense for what runs in the family. Adoptees often do not. DNA testing would fill in some of those missing blanks at the doctor’s office. DNA testing can also connect adopted people to their birth family, or to more distant relatives. DNA testing also can let people know if they are Sudanese, Irish, German, Colombian, or a combination thereof.

4. Role Models/Mentors. All adoptive parents should make every effort for their adopted children to have role models around them who look like them, as well as mentors and friends who are adoptees. Real people, real friends, folks who are over to the house for coffee, parties, barbecues. Ideally, these people are in the adoptive parents’ lives and community prior to adoption. Access to role models and to adoptees as mentors can be especially important when kids become teenagers; it’d be great to have them while they’re still in elementary school.

The last two items from my PowerPoint slide above, Guidelines for Connections with First Families and Consideration of New Paradigms in International Adoption, will be the subject of an upcoming post. I will also add additional Standards of Practice.

Hangouts, Insights, and Possibilities

Posted on June 5, 2013 by Maureen McCauley

Many thanks to the insightful, thoughtful Angela Tucker and Aselefech Evans for their time and conversation at last night’s Google + Hangout.

What we talked about: growing up in diverse/non-diverse places as transracial adoptees; thinking about first families; deciding when/how/why to search; how searching affects parents, siblings, others; how we fit in (or don’t) with the culture to which we were born.

Wonderful discussion of the weight and power of the words “mom” and “birth mom” and “first mom.”

Affirmation of the incredible value of conversations among adopted adults and adoptive parents. We need to keep doing this. Birth parents/first parents were there with us in words/mind/heart/spirit. They have a place at the table, no doubt–just need to keep working on getting them there.

Great stuff.

What needs work: My use and understanding of the Hangout process. We were not able to record this, and had some glitches in the live streaming. I spent a few hours last night after the Hangout reviewing what went well and how next time is going to be a seamless web of audio and video heaven.

Next steps: More Hangouts. While it will never be possible to schedule them at a globally mutually convenient time, the next ones will be live-streamed and recorded.

Topics: So many possibilities, and I welcome more. Whose search is it anyway? Can international adoptees really reclaim their culture? What is “fair” in adoption? What does it mean to be comfortable in one’s skin? Is fraud really new in adoption, or are we just more aware of it now–and how do we reduce/eliminate it? How to deal with differing perspectives on search in the same family, or differing amounts of available information about birth families. What issues arise for adoptees working at adoption agencies? How can we work together to ensure that all adoptees have their original birth certificates?

So let’s keep talking.

Update, Previews, and Teasers

Posted on June 3, 2013 by Maureen McCauley

It’s good to be back. In the last few weeks, I’ve gone from Seattle to Vancouver and back, and then from Washington State to Maryland to New York City to Maryland to Washington State.

Update:

During these 3 weeks: One of my daughters ran her first 5k, and finished in the top 20. My other daughter made the honor roll for her college semester, and was asked to be a teaching assistant this fall in the psychology department. One of my sons received the certification for sanitation at the Culinary School he’s attending. My other son closed on several real estate/rental contracts.

I attended my granddaughter’s dance recital in Maryland. She has since had two tee ball games, Field Day in kindergarten, and her piano recital.

In New York City, I saw the play “The Call,” about a white married couple considering adopting a child from Africa. I also attended the annual conference of the Joint Council on International Children Services. I presented a session on “Standards of Practice for Adoptive Parents: Ethics, Economics, and Responsibilities,” as well as a lightning talk (20 PowerPoint slides in 5 minutes) on The Art of Adoption, featuring poems, paintings, and plays by adoptees.

And each Friday, whatever time zone I was in, I skyped with my dad in Massachusetts. He’s in amazing physical health for an 83 year old. He lives in the Harbor unit of an assisted living facility, diagnosed with Alzheimer’s. He’s delightful to talk with, often asks if any of my kids are getting married. No word on that yet, Dad.

I’ve had lots to reflect on in terms of family, adoption, being in the moment, the futility of art-directing others people’s lives, and more.

Previews and Teasers

Tomorrow night (Tuesday June 4), 7 pm pdt/10pm edt: Angela Tucker (of Closure) and Aselefech Evans via Google + Hangout. The conversation will be about transracial adoption (US and Ethiopia), hair, race, diversity, search: how perception and understanding of adoption changes over time for adoptees, how our definition of “family” can be so complex.

In the next week or so, I will be posting my JCICS workshop information about Standards of Practice for Adoptive Parents. (Teaser: The basics are citizenship, DNA testing, and role models/mentors who are adult adoptees. The more controversial: Insisting on equitable pre-adopt and post-adopt services for birth families.)

I’m thrilled to be soon getting an advance review copy of The Declassified Adoptee‘s soon-to-be-published book. It’s going to be wonderful, powerful, provocative, insightful. A tremendous benefit to the adoption community.

Washington State has also provided two items of fodder recently for writing and commenting. For one, a less than adequate “compromise” bill on access to OBC’s. The second item is still not having a trial for Hana Alemu, more than two years after she was found dead in her adoptive parents’ back yard. A hearing is scheduled this week.

So. There’s lots going on. Lots to write about, think about, reflect on. It’s good for us to be here.

OBC Outrage: Adoptive Parents?

Posted on April 16, 2013 by Maureen McCauley

Adopted children grow up. As adults, as US citizens, they should have the (basic, human, civil) right to access their Original Birth Certificate.

Access is a matter of state law. In only 6 states do adoptees have full access to their own OBC.

Birth parents were never guaranteed privacy through legislation on the federal, state ,or local level. Never. Yet they hold the legal rights (via vetoes written into state laws) to prevent the child they placed for adoption–the child to whom they gave up all legal rights–from accessing knowledge of who he or she is.

I believe in the rights of birth parents. I recognize how often they have been marginalized. The playing field, though, needs to be level here. It’s simply not fair to deny adoptees the fundamental right to know who they are. No other group in the United States is cut off like this.

I’m disappointed in what seems to be happening here in Washington state, as adoptees’ rights are again being crushed. I’ll be writing to the Seattle Times and elsewhere, and I hope other adoptive parents join me.

The world hasn’t ended in Kansas or Alaska, where adoption records have never been sealed. In Oregon, Alabama, New Hampshire, and Maine, adult adoptees can access their records. In these 6 states, adopted adults have the right to access or not access their own records. Many adopted adults choose not to seek their OBC.

The right to one’s original birth certificate should be a real option, not an impossible, illicit act.

It puzzles me that adoptees and birth parents favoring open records have not been more successful. Very frustrating, but I think it shows the imbalance of power in adoption policy. We adoptive parents have been historically mighty in the World of Adoption Policy; it’s time we wielded our clout in this arena for our children to have access to their original birth certificates.

Adopted children grow up. It’s time we treated them as adults.

For some good advocacy, look at the following:

Adoptee Rights Coalition: Information about the status of legislation across the country.

Family Ties: Thoughtful blog written by a grandmother like me, though she’s an adoptee. And has 5 more grandkids than I do.

Bastard Nation: Great name, right? Provocative, helpful information. Here’s the Washington state info.

Washington Coalition for Adoptee Rights and Equality: Information specific to Washington state adoptees.

Advocacy in Olympia, Part 1: The Value of the OBC

Posted on March 25, 2013 by Maureen McCauley

Adoptees, birth mothers, adoptive parents–rallying together for OBC access 3/21/13. I’m on the far left.

Washington State is known to be progressive: gay marriage, legalization of marijuana, more recycling buckets than you can shake a stick at (Yard Waste). So it’s surprising, in some ways, that the debate over allowing adult adoptees to access their original birth certificates (OBC) still swirls.

Around the world, most industrialized nations allow adult adoptees unrestricted access to their OBC as a matter of civil rights. (My daughters from Ethiopia arrived here with their OBC.) That’s not the case here in the US. Two states, Alaska and Kansas, have never sealed adoption records, meaning that adopted people have always had the right to obtain their OBC. New Hampshire, Maine, Alabama, and Oregon currently allow adult adoptees to get their OBC, without restrictions. Most other states allow some sort of access, often fairly complicated, subject to some sort of veto (by the first/birth/biological mother)–and that is unfair.

No legislation exists (or has ever existed) by the federal government or any state government that guarantees privacy to birth parents following an adoptive placement. None.

Adult adoptees are the only group of Americans that are denied the right to know who they are, a basic human and civil right.

Whether they choose to exercise that right is highly individual, but there is no doubt in my mind that they should have the option. Adoption is undeniably complex. Adoptees and birth families should have support and resources available to them, if and when they decide to search. A fundamental right, though, is access to one’s identity.

Last Thursday, I drove from Seattle to Olympia, Washington’s state capitol, about an hour and a half away. The Senate Human Services and Corrections Committee was holding a hearing on 2 adoption-related bills, and, as an adoptive parent, I testified about both. The OBC legislation generated a lot of interest and testimony, from a few adoptive parents (older than me, even), several adoptees who ranged in age from mid-20’s to 70, and several birth mothers. We (adoptive parents, adoptees, birth mothers) were on the same page, urging legislators to allow adult adoptees unrestricted access to their original birth certificates. It’s overdue.

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