Advocacy

Open the records.

The records of the Neubauer twin study describe the lives of people who never asked to be studied. Those people, where they survive, are entitled to their own histories. The records should be released to the surviving subjects and their families, in full, on terms the subjects rather than the institutions set. This page sets out the argument, names the institutions with standing to act, and describes what readers of this archive can do to support the call.

The argument in short

Every argument that has been advanced for the seal collapses into a single claim: that opening the records would compromise the privacy of someone the records describe. That claim is, on examination, exactly backwards. The people the records describe are the subjects. They were placed in the archive without their consent, and they are the parties whose privacy is most directly at stake. Honoring their privacy means giving them their own files. It does not mean keeping their files away from them. The current arrangement protects the institutions that produced the records, not the people the records are about.

The argument that some material in the records may incidentally describe a person other than the requesting subject — a sibling who has not surfaced, an adoptive parent who is deceased, a clinician whose notes are included — is a real argument, but it is an argument for redaction, not for blanket sealing. Archives at every American research university handle exactly this problem every day, and the standard solution is to release with redaction, not to close the file for half a century.

Who has the standing to act

Three institutions, not one, hold pieces of what would be needed to open the archive. None of them is unable to act.

Yale University

Yale is the custodian of the records. As the holder of the deed of gift, Yale’s position has been that the terms set at deposit must be honored. That is a defensible default position for an archive — but defaults can be revisited, especially when the donor institution itself is willing to revisit them. Yale has the standing to negotiate amended terms with the donor’s successors and to broaden access under those amended terms.

The Jewish Board of Family and Children’s Services

The Jewish Board, as the institutional successor to the Child Development Center where the study was conducted, is the donor’s practical successor for the purposes of any deed-of-gift renegotiation. The Board has, since 2018, made limited disclosures to identified subjects in coordination with Yale. It has the standing to go further: to advocate publicly for an amendment to the deed, to release any institutional records of the Center in its own holdings under broader terms, and to support a wider release at Yale. (The Louise Wise adoption records, distinct from the research records, are held by Spence-Chapin.)

The surviving subjects and their advocates

The subjects themselves are not without standing. As the people the records describe, they have a recognized claim under common archival ethics to material about themselves. Coordinated, public, sustained advocacy from a group of identified subjects has historically been the most effective lever in cases of this kind. The triplets, the Bernstein–Schein sisters, and the Rausch–Burack brothers have each spoken publicly in support of opening the archive. Other subjects who have not yet come forward may yet choose to.

What this archive proposes

Concrete moves that the institutions involved could take, in order of escalating institutional commitment:

  1. Publish a finding aid. Yale’s Manuscripts and Archives department typically produces a public finding aid for any collection in its holdings, describing the contents at the box-and-folder level. Whether such an aid currently exists for this collection in publicly accessible form is unclear. Producing one — without releasing the contents themselves — would let subjects know what is and isn’t in the archive about them.
  2. Open the collection to identified subjects on subject-friendly terms. Replace the current case-by-case redacted release with a standing policy: identified subjects may review their own files, fully and in person, with redaction limited to identifiable third-party information.
  3. Open the collection to qualified researchers under standard archival terms. Apply the conditions Yale routinely applies to sensitive collections: registration, supervision, restrictions on naming subjects without consent. This is not an unusual standard, and the archive’s contents are well within what Yale routinely makes available under such terms.
  4. Negotiate an amendment to the deed of gift. The Jewish Board, as the donor’s successor, can request — and Yale can agree to — an amended deed that brings the calendar release date forward, narrows the redaction criteria, and broadens access classes. This is the move that would resolve the matter in full.
  5. Issue an institutional acknowledgment. Independently of the records’ status, both Yale and the Jewish Board can state, plainly, that the study’s design was wrong, that the secrecy compounded the wrong, and that an institutional response that does not include opening the archive is not adequate.

What readers can do

The position of this archive

The records should be opened to the surviving subjects and their families now, with appropriate redaction for incidentally identified third parties, and the institutions holding them — Yale University and the Jewish Board of Family and Children’s Services — should make that opening their priority. The 2065 date is too late. The subjects deserve their own histories within their own lifetimes.


Continue reading: The Yale archive · Access history · Ethics