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. Author manuscript; available in PMC: 2020 Sep 1.
Published in final edited form as: J Law Med Ethics. 2020 Mar;48(1):87–104. doi: 10.1177/1073110520916997

Table 3.

Comparison of open-ended survey themes and interview themes with final merged themes.

Overarching
Categories
Survey Themes Interview Themes Final Merged Themes
Relationship of Law to Research and Clinical Care
  • Liability shapes behaviors

  • Regulatory improvements are necessary

  • Physician apprehension about ordering genetic testing

  • Law encroaching on medicine

  • Liability concerns

  • Need new/updated regulations

  • Genomic testing regulations

  • Defensive medicine

  • Law encroaching on medicine

  • Liability shapes behaviors

  • Regulatory improvements are necessary

  • Physician apprehension about ordering genetic testing

  • Law encroaching on medicine

Sources and Uses of Genomic Data Outside the Health Care Setting
  • Issues surrounding direct-to-consumer testing

  • Insurance

  • Direct-to-consumer testing

  • Insurance coverage and/or discrimination

  • Intellectual property

  • Issues surrounding direct-to-consumer testing

  • Insurance

  • Intellectual property

Emerging Field
  • Knowledge/understanding will increase over time

  • Defining the role of a genetic counselor

  • Bolstering the consent process

  • Balancing privacy and access to data vs. scientific advances

  • Professional society involvement is needed

  • Need for clear guidelines

  • Need for consistency between state, federal, and international law and guidelines

  • Enthusiastic endorsement of genomic testing

  • No genetic exceptionalism

  • Existence and usability of electronic health record

  • Knowledge will increase over time

  • Integration of genetic counselor

  • Informed consent

  • Implications of privacy and access for research

  • Deidentification

  • Privacy concerns

  • Conflict among state, federal, and international regulations

  • Biospecimen use and storage

  • Government agency involvement and capacity

  • Knowledge/understanding will increase over time

  • Defining the role of a genetic counselor

  • Bolstering the consent process

  • Balancing privacy and access to data vs. scientific advances

  • Professional society

  • Professional society involvement is needed

  • Need for clear guidelines

  • Need for consistency between state, federal, and international law and guidelines

  • Enthusiastic endorsement of genomic testing

  • No genetic exceptionalism

  • Existence and usability of electronic health record

  • Biospecimen use and storage

  • Government agency involvement and capacity

Genomic Data
  • Data sharing

  • Return of results and incidental findings

  • Responsibility/need to recontact

  • Quality of genetic analysis & quality assessment in laboratories

  • Reinterpretation of data

  • Ownership of genomic data

  • Transparency of genomic data and quality control

  • Data sharing

  • Database utilities

  • Disclosing important health information

  • Return of results

  • Duty to recontact

  • Quality concerns

  • Data sharing

  • Return of results and incidental findings

  • Responsibility/need to recontact

  • Quality of genetic analysis & quality assessment in laboratories

  • Reinterpretation of data

  • Ownership of genomic data

  • Transparency of genomic data and quality control

Educational Needs
  • Educating the public

  • Need for specialty (genetic/genomic) education for professionals

  • Uncertainty causes anxiety

  • Evolving practice and standard of care

  • Need for educational efforts

  • Fear of genomic advances

  • Trust and transparency

  • Educating the public

  • Need for specialty (genetic/genomic) education for professionals

  • Uncertainty causes anxiety

  • Evolving practice and standard of care