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  <head>
    <title>069-03 Management, monitoring, prevention, safety, ethics, systems issues, and longitudinal care</title>
    <ownerName>Integrated Medical Foundations</ownerName>
  </head>
  <body>
    <outline text="Genomic management and longitudinal care">
      <outline text="Care after the result">
        <outline text="Therapy, surveillance, reproduction, family, support"/>
        <outline text="One result implies risk for relatives">
          <outline text="Autonomy meets relational responsibility"/>
        </outline>
      </outline>
      <outline text="Actionable care plan">
        <outline text="State what is explained and how confidently"/>
        <outline text="List complications, surveillance, urgent symptoms"/>
        <outline text="Do not import advice for a matching gene name"/>
        <outline text="Replace product or bypass metabolic block">
          <outline text="Diet, cofactor, enzyme, substrate reduction"/>
        </outline>
        <outline text="Reduce gain-of-function activity, stabilise protein"/>
        <outline text="Response depends on disease stage">
          <outline text="Established injury may not reverse"/>
        </outline>
        <outline text="Gene-based therapies">
          <outline text="Immune, off-target, insertional, cost risks"/>
          <outline text="Long-term registries needed"/>
        </outline>
      </outline>
      <outline text="Surveillance design">
        <outline text="Justified by risk, treatable stage, benefit"/>
        <outline text="More testing is not automatically safer">
          <outline text="False positives, radiation, sedation, anxiety"/>
        </outline>
        <outline text="Specify age, interval, modality, stopping"/>
        <outline text="Personalise for age and sex penetrance"/>
        <outline text="Anecdote does not override natural history"/>
        <outline text="Plans must survive transitions">
          <outline text="Concise genomic summary"/>
          <outline text="Keep original laboratory report"/>
        </outline>
      </outline>
      <outline text="Cascade testing">
        <outline text="Targeted testing of relatives is efficient"/>
        <outline text="Support sharing with a family letter"/>
        <outline text="Relatives retain the right to decide">
          <outline text="Pressure from family, plans, insurance"/>
        </outline>
        <outline text="Predictive testing needs consent and a plan"/>
        <outline text="Minors: test if childhood benefit"/>
        <outline text="Disclosure without consent is rare">
          <outline text="Serious, preventable harm, no alternative"/>
          <outline text="Legal review, minimum necessary disclosure"/>
        </outline>
      </outline>
      <outline text="Reproductive counselling">
        <outline text="Recurrence from mechanism, mosaicism, penetrance"/>
        <outline text="Options from natural conception to adoption"/>
        <outline text="Non-directive is not withholding guidance">
          <outline text="Do not devalue a life with disability"/>
        </outline>
        <outline text="Disability perspectives correct descriptions"/>
        <outline text="Preimplantation testing limits">
          <outline text="Embryo mosaicism, laboratory error"/>
        </outline>
        <outline text="Counsel before prenatal testing"/>
      </outline>
      <outline text="Pharmacogenomics and precision treatment">
        <outline text="Evidence and actionability vary by pair">
          <outline text="Some justify avoidance or dose change"/>
          <outline text="Others outweighed by kidney, drugs, age"/>
        </outline>
        <outline text="Record results in the medication system">
          <outline text="Raw genotype confuses prescribers"/>
        </outline>
        <outline text="Race is not a substitute for genotype"/>
        <outline text="Tumour matching does not guarantee benefit"/>
        <outline text="Liquid biopsy limits">
          <outline text="False negative with low shedding"/>
          <outline text="Clonal haematopoiesis unrelated to tumour"/>
        </outline>
      </outline>
      <outline text="Privacy and data">
        <outline text="Genomic data are durable identifiers"/>
        <outline text="Consent covers storage, sharing, withdrawal limits"/>
        <outline text="De-identification reduces, not eliminates, risk"/>
        <outline text="Discrimination protections vary by jurisdiction"/>
        <outline text="Direct-to-consumer tests">
          <outline text="Selected variants give false reassurance"/>
          <outline text="Positives need clinical confirmation"/>
        </outline>
        <outline text="Ancestry is statistical, not identity"/>
      </outline>
      <outline text="Equitable systems">
        <outline text="Underrepresentation increases uncertainty">
          <outline text="Weaker polygenic scores, delayed diagnosis"/>
        </outline>
        <outline text="Diverse participation and benefit sharing"/>
        <outline text="Access depends on geography, language, funding"/>
        <outline text="Multidisciplinary services"/>
        <outline text="Laboratories may classify differently">
          <outline text="Check current classification before decisions"/>
        </outline>
      </outline>
      <outline text="Longitudinal psychosocial care">
        <outline text="Relief, grief, guilt, fear"/>
        <outline text="Uncertainty may be harder than an answer"/>
        <outline text="Revisit information at life transitions"/>
        <outline text="Connect to disability-informed support"/>
        <outline text="Avoid diagnostic overshadowing"/>
        <outline text="Care is biological and relational"/>
      </outline>
    </outline>
  </body>
</opml>
