Hello, my name is Martine Hackett and Rachel Grob and I are researchers working on a project funded by the Robert Wood Johnson Foundation about newborn screening for genetic disorders and the experience of parenting. We are researchers from the Sociology Department of Baruch College of the City University of New York and the Genetic Counseling program at Sarah Lawrence College and have received our institution’s clearance to conduct this research. We have also received permission from Peter Waite to post this message. We are interested in this topic because we believe the health care system might work better if the experiences parents had were better understood.
We are looking to interview parents of children diagnosed with Cystic Fibrosis which do not necessarily result in symptoms beginning at birth, who would be willing to talk with us for about an hour on the telephone (calls will be audiotaped). We are specifically looking for parents whose child was diagnosed via newborn screening.
Any information that would identify participants personally will be kept strictly confidential. All written information and audiotapes will be identified only by code number. None of this information will be made available to any one other than the research team. The information will not be given to those referring study participants, or to any one involved in the family’s medical care. Participants’ identity will remain completely confidential in the relevant chapters of my dissertation and any other written documents or publications that may follow.
Any interested parents can first email or call us to see if they are interested in participating. We can explain more about the project and it is perfectly fine if you decide you don’t want to participate after you learn more.
Thanks so much and take care.
Newborn Screening Research Project RACHEL GROB, at (914) 395-2371 (day time) or (845) 675-7055 (evenings and weekends), or by email at firstname.lastname@example.org.