Cohort selection with privacy protection

Abstract

Assembling a cohort includes: receiving genetic characteristic information pertaining to a desired genetic characteristic; using the genetic characteristic information to search a data storage comprising information of previously genotyped individuals to derive a candidate group having the desired genetic characteristic; and assembling the cohort based at least in part on the candidate group.

What is claimed is: 
     
         1 . A system for assembling a cohort, comprising:
 one or more processors configured to:
 search a data storage comprising genetic characteristic information and/or phenotypic characteristic information of individuals for whom genetic characteristic information and/or phenotypic characteristic information have been previously obtained to identify a candidate group having a desired genetic characteristic and/or a desired phenotypic characteristic, wherein the data storage further comprises contact information of the individuals; 
 assemble the cohort based at least in part on the candidate group; and 
 prevent, pursuant to a first role assigned to a first user, the first user from accessing contact information associated with the individuals in the cohort, wherein the first role permits access to the genetic characteristic information and/or the phenotypic characteristic information of the individuals. 
   
     
     
         2 . The system of  claim 1 , wherein the genetic characteristic information of the individuals comprises genetic information that was collected from saliva samples of the individuals and genotyped using a DNA microarray. 
     
     
         3 . The system of  claim 1 , wherein the one or more processors are further configured to, in response to the first user requesting to be designated a second role that permits access to the contact information of the of the previously genotyped individuals:
 prohibit the designation of the second role; and   issue an alert to a second user having an administrator role that such a designation was requested.   
     
     
         4 . The system of  claim 1 , wherein the data storage further comprises personal information, and wherein the personal information comprises family history or environmental information. 
     
     
         5 . The system of  claim 4 , wherein at least a portion of the personal information stored in the data storage was entered by one or more of the individuals. 
     
     
         6 . The system of  claim 1 , wherein the candidate group has the desired genetic characteristic, wherein the desired genetic characteristic is a disease-causing genetic condition, and wherein the one or more processors are further configured to provide information to the individuals in the cohort regarding treatment of the disease-causing genetic condition. 
     
     
         7 . The system of  claim 1 , wherein assembling the cohort comprises adding relatives of individuals in the candidate group to the cohort. 
     
     
         8 . The system of  claim 1 , wherein the one or more processors are further configured to return results to a query only when at least a threshold number of individuals are included in the results, and to indicate a failure when the results include fewer than the threshold number of individuals. 
     
     
         9 . The system of  claim 1 , wherein assembling the cohort comprises administering a survey to individuals in the candidate group, administering to the individuals in the candidate group one or more screening tests, or administering to the individuals in the candidate group one or more laboratory tests. 
     
     
         10 . The system of  claim 1 , wherein the one or more processors are further configured to store information pertaining to a research project in association with the individuals in the cohort. 
     
     
         11 . The system of  claim 10 , wherein the one or more processors are further configured to assign the first role to the first user based on the research project associated with the individuals in the cohort. 
     
     
         12 . A method comprising:
 searching a data storage comprising genetic characteristic information and/or phenotypic characteristic information of individuals for whom genetic characteristic information and/or phenotypic characteristic information have been previously obtained to identify a candidate group having a desired genetic characteristic and/or a desired phenotypic characteristic, wherein the data storage further comprises contact information of the individuals;   assembling a cohort based at least in part on the candidate group; and   preventing, pursuant to a first role assigned to a first user, the first user from accessing contact information associated with the individuals in the cohort, wherein the first role permits access to the genetic characteristic information and/or the phenotypic characteristic information of the individuals.   
     
     
         13 . A computer program product, the computer program product being embodied in a non-transitory computer readable storage medium and comprising computer instructions for:
 searching a data storage comprising genetic characteristic information and/or phenotypic characteristic information of individuals for whom genetic characteristic information and/or phenotypic characteristic information have been previously obtained to identify a candidate group having a desired genetic characteristic and/or a desired phenotypic characteristic, wherein the data storage further comprises contact information of the individuals;   assembling the cohort based at least in part on the candidate group; and   preventing, pursuant to a first role assigned to a first user, the first user from accessing contact information associated with the individuals in the cohort, wherein the first role permits access to the genetic characteristic information and/or the phenotypic characteristic information of the individuals.   
     
     
         14 . The computer program product of  claim 13 , wherein the genetic characteristic information of the individuals comprises genetic information that was collected from saliva samples of the individuals and genotyped using a DNA microarray. 
     
     
         15 . The computer program product of  claim 13 , wherein the computer program product further comprises computer instructions for, in response to the first user requesting to be designated a second role that permits access to the contact information of the of the previously genotyped individuals:
 prohibiting the designation of the second role; and   issuing an alert to a second user having an administrator role that such a designation.   
     
     
         16 . The computer program product of  claim 13 , wherein the data storage further comprises personal information, and wherein the personal information comprises family history or environmental information. 
     
     
         17 . The computer program product of  claim 16 , wherein at least a portion of the personal information stored in the data storage was entered by one or more of the individuals. 
     
     
         18 . The computer program product of  claim 13 , wherein the candidate group has the desired genetic characteristic, wherein the desired genetic characteristic is a disease-causing genetic condition, and wherein the computer program product further comprises computer instructions for providing information to the individuals in the cohort regarding treatment of the disease-causing genetic condition. 
     
     
         19 . The computer program product of  claim 13 , wherein assembling the cohort comprises adding relatives of individuals in the candidate group to the cohort. 
     
     
         20 . The computer program product of  claim 13 , wherein assembling the cohort comprises administering a survey to individuals in the candidate group, administering to the individuals in the candidate group one or more screening tests, or administering to the individuals in the candidate group one or more laboratory tests.