A Summary of the Meeting of May 30-June 1, 2001. Legal and Ethical Issues in Data Linking


The moderator was Robert Goerge of Chapin Hall. The session focused on the ethical and attendant legal barriers to sharing data. The first speaker was Loretta Fuddy of Hawaii. Slides from a Powerpoint used by Ms. Fuddy follow the text.

Ms. Fuddy discussed some of the difficulties of sharing data, using as an example Hawaii's long-term plan to link birth certificate data to other data as part of a perinatal data system. Barriers to the creation of the system include these:

  • Because birth certificates are legal documents, they cannot be released without department of health approval
  • Certain sensitive data are protected by federal law
  • The Health Insurance Portability & Accountability Act (HIPAA) creates its own privacy challenges

Participants from other states, and Chapin Hall staff members, noted similar difficulties with HIPAA data, and, in some states, with TANF and Medicaid data.

Debbykay Peterson and John Oswald sketched Minnesota's data linkage initiative. Minnesota has an extremely comprehensive privacy law. The state attorney general, in particular, favors limiting use of health data in response, in part, to the activities of health maintenance organizations. Key questions include:

  • Are removing identifiers from linked data enough, or must other information, such as race and county information, be removed as well? In some states with small populations, identifying race and county of residence might make individuals identifiable.
  • Is passive consent sufficient or is active consent required?

Strategies for protecting privacy among shared data include

  • One-way sharing--data go to a statistical agency but do not return
  • Third-party module linking
  • Data inflation or salting--the addition of confounding cases

A memorandum of understanding among users can be a powerful protector of all parties.

Slide 1.

Building a Perintal Data System- Legal & Ethical Issues

Slide 2

The MCh program in Hawaii

Slide 3

Advantages of MCH Program Data

Slide 4

Advantages of MCH Program Data

Slide 5

Disadvantages of MCH Program Data

Slide 6

Perinatal Data Issues

Slide 7

Data Utilization & Enhancement

Slide 8.

Hawaii's Long-term Perinatal Data Goal

Slide 9

Future Plans

Slide 10

Building a Perinatal Data System requires a collaborative effort

Slide 11


Slide 12

Hawaii Health Information Corp.

Slide 13

Legal Barriers to Data Linkage

Slide 14

Health Insurance Portability & Accountability Act-1996

Slide 15

Who isi Impacted

Slide 16


Slide 17

Patient Rights

Slide 18

Ethical Considerations

Slide 19

Open Discussion