The mission of The Patient Genome Project is to curate narratives about genetic testing from patient perspectives. The collection of stories will be published in a book that will serve as a resource to prospective and current patients.
Why does it matter?
While academic journals serve as a venue to report physician and scientist experiences with genetic testing, the technical terminology and paywalls associated with academic journals make this information inaccessible to the general public. More relatable patient anecdotes could better inform the public about genetic testing, but limited opportunities exist for patients to share their personal narratives. This is especially problematic because a disproportionate amount of sensationalized patient stories are picked up by the media, resulting in a skewed view of the current state and capabilities of genetic testing.
By providing a diverse compilation of patient stories, The Patient Genome Project will provide a more balanced view of genetic testing from the patient perspective. A comprehensive set of stories will help to normalize patient experiences, inform prospective patients, and illustrate realistic expectations for testing results.
How does it work?
Download the contributing author form from the share your story page of this website. The form, which is a word document, includes sections for contact information, personal preferences regarding recognition, genetic testing details, your story, and attestation of authorship. Once you fill out the form offline, you can upload and submit the completed document on the share your story page.
The Patient Genome Project will accept stories until a sizable and diverse collection has been obtained. We will then organize the stories into a manuscript for publication. If you have noted, by preference on your submission form, that you would like to be contacted regarding your story, we may follow up with you for writing clarification as well as to notify you about the progress of the publication.
Contributing authors do not participate in any financial transactions. There are no fees for story submission or monetary compensation for inclusion in the book. However, all authors will have the option to be recognized for their contribution. To respect the private nature of these experiences, author names will be consolidated into a contributing authors page in the book instead of being associated directly with each story.
Who is eligible to write a story?
Patients who have received a genetic test, either for themselves or for their children, are eligible to write a story. Submissions are also welcomed from untested individuals who can explain their thought process for why they considered genetic testing but decided against it.
What are examples of genetic tests?
The Patient Genome Project strives to collect a broad range of stories. If you are unsure whether a particular test qualifies as a genetic test, feel free to ask us.