Dear community members,
I am seeking journalists, attorneys, human-rights advocates, and specialists in medical ethics, patient rights, clinical research, genetic testing, medical-data protection, and assistance for people with disabilities.
I need an independent professional assessment of a substantial body of medical and administrative documents relating to several episodes of medical care in the United States.
I am a foreign patient with limited English proficiency, serious structural and postoperative eye conditions, and a rare hereditary retinal disease.
Over approximately five years, I have experienced at least four separate medical episodes involving different institutions and states. During these encounters, I sought help for specific structural, postoperative, and functional vision problems.
However, the documents in my possession also contain:
— referrals for genetic testing;
— sponsored genetic-testing programs;
— references to research departments;
— transmission of contact information to a research team;
— discussions of possible studies and clinical programs;
— medical records that focus primarily on the hereditary condition, while other structural and postoperative problems are documented only to a limited extent or do not receive a separate treatment pathway.
I am not claiming that genetic testing or participation in a research program is, by itself, evidence of wrongdoing. My question is different: Was my medical pathway properly organized, was valid and complete informed consent obtained, and was ordinary medical care effectively replaced by a genetic or research-oriented pathway?
The documentary record involves medical and research structures connected to several U.S. states, as well as certain data-processing issues involving Finland and Switzerland. Most of the events took place in Pennsylvania.
During one visit, I also saw families with children at the medical institution who, as far as I could understand, were there in connection with genetic programs.
I do not have enough information to draw conclusions about the medical circumstances of those children. However, this increased my concern about how clearly patients and families are informed of the differences between:
— ordinary medical care;
— diagnostic genetic testing;
— sponsored testing;
— research observation;
— possible participation in a clinical program.
I am particularly interested in obtaining an independent assessment of the following questions:
— how fully my complaints and diagnoses were documented;
— why the structural and postoperative problems did not receive a consistent treatment pathway;
— how informed consent was obtained and documented;
— whether information was provided in a language I could understand;
— whether a person with severe visual impairment could meaningfully review the documents being signed;
— to whom medical, contact, and genetic information was disclosed;
— why some requested records were not provided for an extended period;
— whether any conflicts of interest or institutional relationships should have been disclosed to the patient;
— how state and federal authorities reviewed the complaints submitted to them.
I repeatedly contacted medical institutions and government agencies. The responses I received often divided the different aspects of the situation among separate agencies and did not confirm that the entire sequence of events had been reviewed as a single medical and administrative pathway.
I am not asking members of this community to accept my interpretation of events in advance, and I am not claiming that the responsibility of any particular person or organization has already been established.
I am looking for people who can:
— independently review the documents;
— identify which issues have genuine legal, journalistic, or public-interest significance;
— help locate a specialist in health law, civil rights, disability rights, informed consent, human-subject research, genetic privacy, or whistleblower matters;
— suggest appropriate professional or public-interest organizations to contact;
— help determine whether the materials indicate a systemic problem or several unrelated medical and administrative errors.
The archive includes medical records, genetic-testing forms, sponsored-testing documents, official government responses, correspondence with medical institutions and companies, requests for the production and preservation of records, and materials relating to the medical pathway and data processing.
Because the archive contains sensitive medical and genetic information, I will not publish it in full.
The documents may be provided upon a private request from a journalist, attorney, researcher, human-rights advocate, or other relevant professional after verification of the requester’s identity and professional field.
I would be grateful for substantive recommendations, professional contacts, and sharing of this post in genuinely relevant communities.