My Letters re NYS Bill 7602 - Donor Conceived Person Protection Act



Good morning,

I am sending this email to many of my friends that are NYS residents and asking a favor.   Most of you are aware that my children are donor conceived.  I have copied you on two Emails below I sent this morning to my State Senator.  Please read them.  

For the first time a bill has been introduced into the NYS Senate that would subject the infertility industry to regulations with respect to the use of donor gametes and donor conception methods of family building.  I support this bill.  I don't expect every section of it to survive the legislative process but getting it before the right committees and moving forward is a great first step.  A step that will only happen if there is support for discussion to continue.

A link to the bill itself is within the below emails.    

I would ask that you contact your State Senator and voice your support for this bill.  I am copying at the bottom a phone call script that can be used on a phone call or towards an email. If you don't know who your Senator is here is a link.  

https://www.nysenate.gov/find-my-senator

Any help is appreciated.  Thank you. 

Eric

Sent from my iPhone

Begin forwarded message:

From: Eric Schwartzman
Date: December 29, 2021 at 11:03:44 AM EST
To: gianaris@nysenate.gov
Cc:
Subject: Fwd: Bill 7602 - Donor Conceived Person Protection Act

Dear Senator Gianaris,

This is Steven who I referred to in my email below.  My email mistakenly did not upload the photo to my email.  

[picture omitted from blog post]

It is children like Steven that would be protected under this bill and I again urge you to support the bill and perhaps even sign on as a co-sponsor with Senator Gallivan.  In your role as Deputy Majority Leader it would go a long way in encouraging the Democratic caucus to listen and possibly add their support to the bill. 

There are many Stevens out there who without the protection of progressive legislation like this that will be born with genetic time bombs that they and their birth families will not know about and be able to treat early to prevent serious medical conditions from developing or fatalities such as experienced by Steven Gunner.  

Thank you again for your consideration. 

Yours truly,

Eric Schwartzman

Astoria constituent. 

Sent from my iPhone

Begin forwarded message:

From: Eric Schwartzman 
Date: December 29, 2021 at 10:49:05 AM EST
To: gianaris@nysenate.gov
Cc:
Subject: Bill 7602 - Donor Conceived Person Protection Act

gianaris@nysenate.gov

 

https://www.nysenate.gov/legislation/bills/2021/s7602?fbclid=IwAR0dRjPbcO1eV_NXqM3A9SGzj6KY9vLFn3zH6D9VPUJq-oeA9qn2dlqKOMI

 

 

Dear Senator Gianaris –

 

My name is Eric Schwartzman and I am an Astoria resident in your district.  I live at ______ here in Astoria, NY.    I am also the parent to two children conceived via donor conception.

 

I am writing to urge you to support Senate Bill 7602, the Donor Conceived Person Protection Act.   This is a topic that has been crying out for regulation and structure to protect the individuals to be conceived and created using assisted reproductive technologies such as donor conception.

 

Here is the short version of the bill's narrative:

 

"The "donor-conceived person protection act" ensures that reproductive tissue banks, licensed by the department of health, collect and verify medical, educational and criminal felony history information from any donor it procures reproductive tissue from and to disseminate such information to a recipient before a recipient purchases or otherwise receives such tissue, and to donor-conceived persons, if any, when such persons turn eighteen years of age or earlier upon consent of the recipient parent or guardian; defines terms; makes related provisions."

For the past 15 years I have been informally counseling men and couples considering using the donor insemination to create their families as well as men who have created families with their spouses and partners using DI.   The greatest fear these families have had has been that the donor sperm they have procured has an incomplete medical history and/or that the  testing asserted as truthful, and up to date, is just the opposite and that the sperm purchased has a medical issue hidden or omitted from the history presented to the purchasing recipient parents that will impair the health and life of the child to be created.  This bill would ensure not only that the parents be fully aware but that the donor conceived person will eventually receive a full medical history of their genetic parent just as any naturally conceived child would have from their birth family.

 

I came to know the story of the couple Laura and David Gunner, who I believe have written your office, and who worked with your colleague State Senator Gallivan to create this bill.  Their story and the loss of their child Steven is a sobering one.  Their son Steven, was conceived via a donor, Donor 1538, that had self-reported his medical history omitting that he suffered from schizophrenia and that his first significant psychiatric hospitalization occurred prior to the10th grade.  The donor's life was marked by institutions, incarceration and homelessness. The Gunner's watched their child decompensate, struggle, suffer and sadly die. No amount of nurture, love, support or resources prevented it.  Steven and his Donor, lived and died exactly the same. Both had almost identical presentations of symptoms and progression of Schizophrenia.  I am attaching below a picture of Steven Gunner to put a face to this story. 

 

The regulation envisioned by Bill 7602 would prevent donor sperm from donors like Donor 1558 from being available to New York State recipient parents as laws and regulations such as this would force the cryobanks and sperm banks to screen out such individuals.  Where such histories would exist the banks would be held accountable.    The cryobank that the Gunners worked with claim that they have no liability and they were not required to validate the information presented by Donor 1558.

 

I ask you this sir,  what business exists where you are allowed to market something that can be completely untrue and blame it on the government because no law held them to a higher standard? 

The cryobank used by the Gunners will never be held responsible. Worse, all banks are continuing to self regulate. I challenge you to find another business in America that can operate like this. As far as I know, the only business that operates with no oversight or regulation of their "product" is the business who supplies genetic material to create humans.

I urge you Senator to support Bill 7602 and I am available to meet inperson or via zoom or phone call to discuss this bill, these issues, and the business of donor conception as a whole that exists in this nation.  As I stated I have working with families and men on these issues for 15 plus years and have my own experiences as the parent of two donor conceived individuals so I am intimately aware of the fears parents face.  

 

I can be contacted at this email address, or via my cell phone at __________.  I live ten minutes from your Astoria office and would be available to meet with you or a member of your staff to discuss this bill either at your office or perhaps grab a coffee outside as I believe this is that important.  

Merry Christmas and Happy New Year to you and your family.  

 

Thank you,

Eric Schwartzman

Sent from my iPhone

NYS Legislation: The Donor Conceived Person Protection Act

A legislative bill titled The Donor Conceived Person Protection Act has been submitted for consideration to the NYS Senate by State Senator Patrick Gallivan of the 59th Senate District.

This legislation resulted from one family's story where a donor self reported their medical history omitting important details. Consequently both donor and a child conceived via this donor each died due to the medical condition omitted. The cryobank never verified or validated the medical profile and has stated it was not required to.

It is an impressive and progressive piece of proposed legislation that I have signed on to support. I learned of it via a post on Facebook and quickly made some inquiries. The link to the full text will be in this post.

Personal opinion and request:

I ask that NYS residents contact their State Senator and Assembly Member to voice your support for the bill. A proposed script is provided in the images here. If you find sections of the bill you have strong feelings about voice them of course. This is a start to protect children and to put some regulation around an industry left to police itself.

As I get more into the details I will be able to discuss more. "

Thinking About Being Non Genetically Connected

The question I saw asked is whether you think about being the non genetic parent and does it get easier. This is not a post promoting donor conception nor is it a post to argue for donor conception as a practice to be stopped.

It's a post to assure those individuals who are parents to donor conceived individuals to be 100% present in that role. You are there now. Loving your kid, whether they are a child or an adult, is not enough. You must guide them, listen to them, validate their feelings and actions. You must be present. To feel you are a true parent is to act as one.

It's different for everyone. I may not be their biological father but they are 100% my children. I don't think of our relationship as being anything other than a full and complete relationship. I have been there from diapers to paying for college. All the ups and downs, fights and hugs. Shared all the milestones. Been there to be told you are not my real dad in a fit of rage and anger. And be called from the emergency room to come and take them home. The definition of being a parent is that it's not easy. You don't sign up for just the bragging moments. You sign up to be 100% in and there as their parent. Did I think about not being "real"? Years ago maybe. I started my blog to document the evolution of this life. Link through and start back in 2005. You will see how it evolves.

So when I saw this meme/question today I wanted to answer it directly. There is no real or fake when you are a parent. If you bring the doubt into the relationship it will always be there. Yes the genetics are a different issue. Those are other discussions. If you are a parent make sure you do the work.

The Great Sperm Heist

Great article about donor conception and the sperm heist. The twist here I had not seen in earlier exposes that the sperm of healthy patients being stolen like this. I thought I had seen it all in these stories. Apparently not. 

https://www.theguardian.com/lifeandstyle/2021/sep/25/the-great-sperm-heist-they-were-playing-with-peoples-lives


#DonorConceived #DonorSperm #FertilityFraud #AncestryDNA #DNATesting #FamilySecrets #DNADetectives 

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The Great Sperm Heist

Great article about donor conception and the sperm heist. The twist here I had not seen in earlier exposes that the sperm of healthy patients being stolen like this. I thought I had seen it all in these stories. Apparently not.


#DonorConceived #DonorSperm #FertilityFraud #AncestryDNA #DNATesting #FamilySecrets #DNADetectives

Sent from my iPh

2006 Video re This DI Dad’s Fears

Fears in 2006. 

https://m.youtube.com/watch?v=7pC_59Uw4D4

Back in 2006 when my #donorconceived children were still small, four and under, I contributed this video to a fledgling #internationalinfertilityfilmfestival  organized by Melissa Ford aka #StirrupQueens repping the #donorconception side of TTC and #RecipientParents, although that phrase was not yet in vogue.  I did not know what to submit.  I think this was my second entry.  I simply read a chapter I had written and contributed to the #VoicesofDonorCobception book edited by #MikkiMorrisette jointly with the #DonorSiblingRegistry.  I had only been publicly  in this world for a year or so.  And as my kids were young my fears still present in my day to day life raising them as 1/2 of a married couple.

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Will My Kids Be OK ?

The truth is no one can give you an answer to that question or any question that definitively can predict the future. The only fact that is definite, is one parents don't want to hear and that is to not choose donor conception. It's sounds horrible to be that blunt, but it's the only option you know with 100% certainty the outcome.
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Putting that aside our job as parents is to protect our children and to prepare them for what they need to face in life. If we choose donor conception as a family building method there are responsibilities we have, in my opinion, that all start with being truthful.
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Part of that truth is that a choice was made that was beyond the donor conceived child's control. Again I am not saying anything new here.
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As individuals we make choices and family building is one of them. We make choices based on many factors. Infertility. Economics. Faith. Family. We make these choices for ourselves everyday.
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Where families are grown without the need for medical intervention those choices are generally accepted as personal and kids are stuck with the choices parents make. No one chooses who their parents are. That happens here too but in the former scenario the children are connected to their parents biologically.
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Let's get back to the question. Will my kids be ok?
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The answer has many layers. A lot of it comes down to actions, luck of the draw, and planning. We all want to say that love and desire alone will ensure the child will be ok. But even in families that have absolutely perfect loving parents that are open and transparent and listen fully, that an individual born via donor conception may have questions or desires for something "missing".
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Some individuals never feel anything is missing from their life. They don't have any desire to find that absent biological connection. Dare I say that blood parent. They don't need to know a medical or ethnic history that comes from their donor. But some do. Even in perfect households.
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My kids have rarely asked about their donor. They have had moments of curiosity and even joined 23 and Me to put their genes out there to see what may happen. It confirmed that my two are full siblings and that their half sibling sister is exactly that. My kids found two of their three known half siblings via the Donor Sibling Registry and their newest half sibling found them via an Ancestry DNA match.
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I can't quote surveys but I can say most kids who grow up knowing do better by not having a secret waiting to be discovered and found out shocking their sense of identity. That is a big big deal. Will they have questions? Maybe. Will they have a desire to search? Maybe. Maybe not.
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Will they have you by their side to listen and to validate their questions or concerns? That is up to you. Will they wonder what if? Maybe.
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Will your kids be ok?
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I can't say. There are possible challenges. There are unknowns. Each brings a risk.
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I am not saying any of this to scare anyone. I am saying it because this is the reality you face when choosing donor conception. My kids are good kids. They are my kids no matter what. I am not their biological father. But I am their Dad. We have lived through too much together to question that.
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Are they ok? So far. My job was / is to raise them and protect them and guide them. My responsibility is to be truthful with them, listen to them, respect their questions and decisions, and to put their needs in this area ahead of mine.
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Did I mess up their lives? Only they can answer that. When we ask will they be ok, are we asking to answer our fears or are we asking to propel us to give them the tools and info to ensure they are.
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Choosing donor conception is a choice that requires an acknowledgment of responsibility to not hide from the issues our children may face and the responsibility that we made that decision.
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Make what you will of my words.
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#recipientparent #donorconception # donorsperm #donoregg #biologicalparent
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Repost via @inconceivedable with @make_repost


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Sides of the Circle. Understanding Donor Conception.

I am still here. I am just mostly over there. On Instagram.

My focus is still on my children. Working to be a good Dad. To recognize it's not about me. That realization came long ago. Trying to help others with questions they may have. I can't say I am pro DC or that I am anti DC. I understand the feelings on all sides of this circle. It is sides of a circle as for so many it still is a raw reaction that makes people want to see things as black and white. It either is a bad thing or it's a wonderful thing. In truth it's a thing that has many sides of a circle in that we need to recognize each other's feelings and you can't really expect someone to make a 90 degree turn and get it. It takes time and gradual course corrections and points of understanding. The slow curve of a circle.

I am today as I found myself in 2005 working from the middle. I got knocked here quickly at that Toronto Conference hosted by Diane Allen where I met so many wonderful people. Diane of course. Wendy and Ryan Kramer. Olivia Montuschi. And several others including Jo and Rebecca that allowed me to see differing experiences. Jarringly so for a youngish dad of 41.

So today I am here in the middle or rather continuing around the sides of this circle. Still learning. Still listening. Trying to help or explain nuances where I can.