The NJ Legislation May Have Wide Spread Effects

I met today for three hours with a representative of of NJCare (who prefers not to be named and will thus be referred here as THE REP) to discuss my concerns about this proposed adoption access bill, and discovered more reason for concern. This post is long - but read to the end and find link to a shocking document.

THE REP talked about being excited about the possibility of the NJ bill finally going through after 30 years of trying. He sees the one year veto period as negligible and feels that when all is set and done, this eighth state will be a model for others, particularly NJ and PA.

The bill approved by the Senate gives original parents one year from the date of enactment of regulations to contact the state registrar and opt for non-disclosure. The bill requires the state to conduct a national media campaign to spread awareness of the new law. [At what financial cost?]

After the opt-out period, parents will be required to fill out a form declaring whether they wish to be contacted directly, through an intermediary or not at all. [More costs.] However, parents who tell the state they don't want to be contacted will still be required to submit nonidentifying information about medical, cultural and social histories.
My original concerns follow:

5. (New section) a of the proposed S799 which hs passed the Senate.

An adopted person 18 years of age or older, a direct descendant 18 years of age or older of the adopted person if the adopted person is deceased, or the adoptive parent or guardian of a minor adopted person may obtain from an approved agency or the attorney who facilitated the adoption any family history information concerning the adopted person that is contained in that person's adoption file, upon submission of a written, notarized request to the agency or attorney....As used in this section, "family history information" includes medical, cultural and social history information provided by the adopted person's birth parent and maintained by an approved agency or attorney who facilitated an adoption.

In addition, I am also concerned about:

Page 9, line 10, section 10 (a) An adopted person 18 years of age or older, a direct descendant 18 years of age or older if the adopted person is deceased, or the adoptive parent or guardian of a minor adopted person, may request the approved agency or intermediary that placed the child for adoption or conducted an investigation pursuant to section 12 of P.L. 1977, c.367 (C.9:3-48) to provide any available non-identifying family medical history information concerning the adopted person contained in that person's adoption file.

b. Upon receipt of a request pursuant to subsection a. of this section, the approved agency or intermediary shall provide the requester with a detailed summary of any available non-identifying family medical history information concerning the adopted person contained in the person's adoption file.

A similar provision exists in the bill on page 7,line 7.

Reasons for concern and supporting evidence:

1. Mothers who relinquished their right to raise their children relinquished no other rights as citizens and are thus entitled to the same protection of the law as all other citizens. We have a constitutional right to privacy and to be "secure in our persons" and "our papers" and "effects" from access to our confidential medical/social files without our consent.

2. Relinquishing mothers shared information – at a time of great stress - with social workers, clergy, and other adoption agency employees who were providing health counseling to them. As such, it is confidential and covered by HIPAA’s clear intent just as a psychiatrist's patients' counseling would be.

3. Mothers were not specifically asked nor did they agree to provide this information for the purpose of it being shared with their children at a later date – unless a mother returns to her agency and signs a waiver of release.

4. The law does not provide the right of mothers to their OWN agency records.

5. Section 5A, ironically, calls for the adoptee to submit a "written, notarized request" to obtain this information, but does not require permission of the mother whose records are at question.

6. The usefulness of such information is medically is minimal at best. Mothers are relatively young at the time of relinquishment and cannot tell anyone what their parents would die of or even of diseases they themselves might develop later in life.

7. Mothers have an equally compelling need for medical information to be shared reciprocally with them, as it could be crucial for a mother deciding to have subsequent children, or life saving for any other children she might bear.

8. Mothers were asked personal details about their sexual life (first sexual intercourse, number of partners, number of pregnancies, abortion, attempted abortions). Revelation of such inflammatory information is not only an embarrassing violation of confidentially to the mother, but could be very harmful – rather than helpful - to the adoptee, especially being shared by a stranger.

9. Agency records routinely contain judgments about mothers. If she cried too much she was labeled "hysterical" or "out of control." If she didn't cry "enough", she was often labeled "cold" and "callous"..."uncaring."

10. Adoptees have a right to their OBC, to know the names of their progenitors. Any further information needs to be gleaned from those persons, not from those person's confidential files, just as all non-adopted do.

Adoptees justify their “right” – or need – for additional confidential medical and social records due to the possibility that they mother is deceased or unable leaving them without medical vitally important history. The fist concern is mediated by the fact that access to the OBC would secure access to a death certificate which in turn would reveal grandparents names. These are emotionally compelling arguments but gain, looking at adoptees rights in terms of equalizing them with non-adoptees, we see that many people have one or more parent who is unknown to them, has deserted, is mentally incapacitated to the point of being able to reveal accurate or useful medical history. Additionally, religious beliefs or simply very secretive persons may be inclined not to reveal their history to an offspring.

It is time for NJCare to recognize what Adam Pertman testified to, that it was time to see beyond simply thinking adopted people only want or need their medical histories, adding that having their original birth certificate and the names of their biological parents represented a much deeper need and should be their right, not only for their psychological health and sense of well-being, but also making them equal to the rest of us who always had this information.

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At this meeting today I discovered that NJ has has a form that has been in effect since 1977. The form is entitled Adoption Medical History and is a 19 page form that exacts the most detailed medical history I have ever seen in my entire life for both the relinquishing mother and father, and is routinely given to adoptive parents to ensure the "pedigree" of the child.

The form is NOT completed by the mother or father, but rather by a third party - physician or other. We are trying to research this.

On the final page, there is a section for adoptive parents to sign an understanding of receipt of the information that seems to be a release of liability against the adoption agency.

No where on the form however is there any place for the mother or father to sign a release of this information which covers all possible genetic diseases, and also non transmittable or genetic facts such as abortions, having smoked pot, and STDS such as chlamydia. We are also attempting to ascertain whether there is any separate release form for relinquishing parents to sign, giving permission for this information to be shared.

I scanned the form as a PDF and uploaded it at tinyurl.com/NJMedHist. Look for PDF icon in upper right.

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THE REP assured me that once the bill passed, there was ample time during the regulations portion to make adjustments. I was not sold, especially when he suggested regulations could define vague terms such as "social history" and could even select between vital medical information and less vital and non genetic or transmittable facts included all on the same form. I saw no possibility of that as the form is already in use and being to adopters.

Read the form. I believe you will share my concerns about this violation of the privacy and confidentiality of mothers (and fathers.)

I fully support access to BILATERAL access to the OBC.

I also fully support and encourage mothers to go their agency and sign a waiver or release to revel any and all information they saw fit to share.

I also support adoptees having access to their PEDIATRIC hospital birth records, again just as any non-adopted person might have access to their own hospital birth records...but not that of their mother.

I FIRMLY OPPOSE, however, the violation of our confidentiality and privacy by revealing any medical, social or cultural information without our specific permission -- anything beyond ethnicity and age.

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In cruel and ironic twist, this letter was printed in a major NJ newspaper Monday, March 22 by a "coalition" of all opposed to the bill.

SEE COMMENT LABELED MORE