Access-to-results debate
This page has four parts, in the order you use them. Part 1 is what you need to know. Part 2 says what to do, in plain English. Part 3 shows the work done once on a case that is not yours. Part 4 is your own work and where to turn it in.
Open your materials, follow the steps, then turn in your work.
Argue a CER position on whether patients should receive raw genetic testing results directly.
Optional: listen or watch a unit review▸
Part 1 of 4 · Background and definitions▸
💡 Big idea: Genetic results can be uncertain and easy to misread, so who controls access to them is an ethical decision that can protect or harm a patient.
- • Raw genetic results may include variants of uncertain significance that are easy to misread without training.
- • Proponents of direct access argue that patients own their biological data and have a right to it immediately.
- • The 2013 FDA order restricting 23andMe health reports shows how regulators weigh access against potential harm.
A holds one non-working but usually never gets sick, so an honest counseling memo must report reproductive odds without letting 'positive' be misread as a diagnosis.
Genetic results can be uncertain and easy to misread, so who controls access to them is an ethical decision that can protect or harm a patient.
Driving question: If a genetic test comes back with a , should the patient see that raw result directly, or only after a clinician explains it?
What you already know: A holds one non-working but usually never gets sick, so an honest counseling memo must report reproductive odds without letting 'positive' be misread as a diagnosis.
New idea: Genetic results can be uncertain and easy to misread, so who controls access to them is an ethical decision that can protect or harm a patient.
Visual or model: No figure is attached to this lesson. The readings, the worked example and E1 to E3 carry the evidence.
- Observe or measure the relevant feature in access-to-results debate.
- Organize the observation with a stable evidence ID.
- Apply this rule: Use science to estimate consequences, then state the value judgment and tradeoff that determine the decision.
- Choose the option the evidence supports and state the limit of the conclusion.
Real biomedical example: If a genetic test comes back with a , should the patient see that raw result directly, or only after a clinician explains it?
What the evidence supports: E1 to E3 support the daily take-home when the response meets the stated success criteria.
What it cannot prove: The package does not support claims beyond this lesson's or any real patient diagnosis.
- • : A short single strand of that binds to a target sequence and gives DNA polymerase a starting point to build a new strand, as in .
- • : A bacterial that cuts at a specific sequence, leaving clean or sticky ends used to splice genes together.
- • : A lab method that uses an electric field to pull fragments through a gel so they separate by size and show up as bands.
- • : A chip holding thousands of tiny spots that lets scientists measure the activity of many genes at once by detecting which spots light up.
- • : The pairing of two single or RNA strands with matching base sequences into a double strand, used in tests to detect a specific gene.
- • marker: A measurable feature, molecule, or gene used to identify a cell, organism, or condition, like a flag that signals something specific.
Use it now: Choose one decision option. Cite E1 and E3, then explain how the rule connects the evidence to your choice. This is thinking practice for the one turn-in named under Turn in, not a second submission.
Go further, optional: The source links below are optional enrichment. Every fact required for today's local evidence decision appears in this lesson package.
A defensible biomedical decision separates scientific evidence from value judgments, identifies who may benefit or be burdened, and states the uncertainty and tradeoffs that remain.
Limit: Scientific evidence can inform the options and likely consequences, but it cannot choose a single value-neutral answer.
Use science to estimate consequences, then state the value judgment and tradeoff that determine the decision.
Limit: A review-board model organizes reasoning but does not make one ethical principle automatically outweigh every other principle.
You can argue a position on direct access to genetic results.
Limit: E3 defines the classroom product or success criterion. It is not independent scientific evidence and cannot justify a clinical or causal claim.
Today's decision · Simulated classroom evidence scenario
Your role: medical interventions team member
Decision: Your team must decide what the evidence from access-to-results debate supports before submitting the claim-evidence-reasoning response named on today's page.
- • Argue that access rules must handle uncertain variants, because a result the experts cannot interpret is easy to misread.
- • Hand every patient the raw result, since a genetic test gives a clear yes or no like a pregnancy test.
- • Look up what patients actually did after getting an uncertain result alone, since neither side has that outcome evidence.
Response: State one choice, cite at least two evidence IDs, explain the rule that connects them, and add one limitation. Use it inside the one turn-in named under Turn in; it is not a separate submission.
Claim ceiling: Today's evidence supports a classroom claim about access-to-results debate. It cannot prove causation, diagnose a real patient, or justify action outside this room.
Reason for review: Your team must decide what the evidence from access-to-results debate supports before submitting the claim-evidence-reasoning response named on today's page.
Context: Genetic information is powerful and easy to misread, so who controls access to it is a medical and ethical decision, not just a technical one.
- • T1: Read the access-to-results case brief in myPLTW if it opens. If it does not, use this case summary: Patient R-21 ordered a direct-to-consumer test and downloaded the raw data file, a list of hundreds of thousands of DNA letters. A free website flagged one variant in a heart-rhythm gene as a , which means scientists do not yet know whether it raises risk. R-21 has no symptoms. R-21's clinician says the variant needs a clinical-grade confirmation test and a before anyone acts on it. R-21 says patients own their data and should get every result directly and right away. The question: should patients receive raw genetic results directly, without a clinician?
- • T2: Write two prepared questions about giving patients raw results without a clinician.
- • T3: Draft a CER with a claim, two pieces of evidence, and your reasoning.
- • T4: In the debate, note one counterargument and whether it changes your position.
- • T5: Submit your CER and reflection as one PDF in Schoology.
- • E1: A defensible biomedical decision separates scientific evidence from value judgments, identifies who may benefit or be burdened, and states the uncertainty and tradeoffs that remain.
- • E2: Use science to estimate consequences, then state the value judgment and tradeoff that determine the decision.
- • E3: You can argue a position on direct access to genetic results.
Measurements: Use only the measurements, units, graph, or counts supplied in today's task. No additional patient measurement is implied.
Uncertainty: This is a composite classroom scenario. Missing history, measurements, or confirmation tests remain unknown and limit the conclusion.
Students often think a genetic test gives a clear yes-or-no answer, like a pregnancy test, so raw results are always safe to hand straight to the patient. The trap: Many results are variants of uncertain significance, meaning even experts do not yet know if they cause disease. Treating an uncertain variant as a diagnosis is the trap, because it can trigger fear or medical decisions the evidence does not support.
- CER:
- Claim, Evidence, Reasoning: make a claim, back it with evidence, explain your reasoning.
- SOP:
- Standard Operating Procedure, the exact steps to follow (especially in a lab).
- Tracker:
- Your PLTW progress log where you record completed evidence.
- myPLTW:
- The PLTW course site where you do the online activities. Find it in Clever with your Microsoft sign-in, right next to Schoology.
Tap the speaker to hear a term. Add two of these to your notebook glossary with a definition and an example in your own words.
Pick just 2 or 3 words from today and make them yours: write what each one means in your own words, name the context clue or evidence that helped, then give one example from what you actually did in Access-to-results debate. Try your own words first; the glossary is there if you get stuck. This is voluntary and counts as extra credit, so keep it short.
Saved on this device. Show Mr. Mendoza or add these to your notebook glossary to claim the extra credit.
Part 2 of 4 · Directions in plain English▸
2.1 Open your materials
Use the materials named in the first step below. Open lesson resources.
2.2 Start the work
Read the access-to-results case brief in myPLTW if it opens. If it does not, use this case summary: Patient R-21 ordered a direct-to-consumer DNA test and downloaded the raw data file, a list of hundreds of thousands of DNA letters. A free website flagged one variant in a heart-rhythm gene as a variant of uncertain significance, which means scientists do not yet know whether it raises risk. R-21 has no symptoms. R-21's clinician says the variant needs a clinical-grade confirmation test and a genetic counselor before anyone acts on it. R-21 says patients own their data and should get every result directly and right away. The question: should patients receive raw genetic results directly, without a clinician?
Show all 5 required steps
- Read the access-to-results case brief in myPLTW if it opens. If it does not, use this case summary: Patient R-21 ordered a direct-to-consumer DNA test and downloaded the raw data file, a list of hundreds of thousands of DNA letters. A free website flagged one variant in a heart-rhythm gene as a variant of uncertain significance, which means scientists do not yet know whether it raises risk. R-21 has no symptoms. R-21's clinician says the variant needs a clinical-grade confirmation test and a genetic counselor before anyone acts on it. R-21 says patients own their data and should get every result directly and right away. The question: should patients receive raw genetic results directly, without a clinician?
- Write two prepared questions about giving patients raw results without a clinician.
- Draft a CER with a claim, two pieces of evidence, and your reasoning.
- In the debate, note one counterargument and whether it changes your position.
- Submit your CER and reflection as one PDF in Schoology.
Lost your place? If you got pulled away, find your place by checking which of the five steps you finished: read the case brief, wrote two questions, drafted your CER, noted a counterargument in the debate, or submitted in Schoology. Pick up at the first one you have not done.
- 0-5Hook screenshot; frame the debate question
- 5-20Silent read of access-to-results case brief; draft two questions
- 20-35CER draft: claim, two evidences, reasoning
- 35-65Structured debate: direct access yes vs. clinician-mediated only
- 65-75Written reflection: state one counterargument and whether it shifted your position
- 75-80Submit CER and reflection in Schoology; preview the lab
- • Hook: Show a real direct-to-consumer genetic result screenshot and ask: what would you do if this arrived in your email tonight?
- • Why it matters: Companies like 23andMe now provide raw data downloads; clinicians did not choose this, but patients expect a response.
- • Today's structure: case brief, CER prep, structured debate, reflection.
- • Exit goal: CER and reflection submitted in Schoology before the bell.
PLTW connection and today's work
Today's debate is a John Hay original. The PLTW activity this part of Lesson 2.1 connects to is Activity 2.1.2 Copying Our Genes (PCR): open it in myPLTW if it opens and review the PCR diagram before Friday's gel; for the debate, review the CER rubric on this page.
Today's stopping point: All Unit 1 work should be submitted; this opens the testing-methods part of Lesson 2.1.
Today uses John Hay teacher-created practice. It builds skills for the course, but does not count as completing an official myPLTW activity.
Course connection
- Activity 2.1.2 Copying Our Genes
Use the turn-in directions in Part 4 of this page. Do not create a second submission unless your teacher asks for one.
Show another explanation or a smaller first step
Need help? Choose a starting point
Part 3 of 4 · Worked example▸
This is a parallel case, not your own. Read it for the order of the work, then do your own in Part 4.
Parallel case, not today's prompt: should a college require its athletes to be tested for sickle cell trait before they can play?
Claim: A college may require the test, but only if the athlete can choose a signed waiver instead and the result goes to the athlete and the team physician, not to coaches or the athletics office.
Evidence 1: Since 2010 the largest college athletics association has required its Division I athletes to show a sickle cell trait test result or sign a waiver declining it, after several exertion-related deaths in athletes who carried the trait and did not know it.
Evidence 2: Sickle cell trait is not a disease; most people who carry it never have symptoms. A positive result is genetic information about the athlete and, in part, about the athlete's relatives, and a coach who learns it could treat the player differently.
Reasoning: The benefit is real and specific: a known result changes how a trainer manages heat, hydration and rest, which is where the deaths happened. The cost is a genetic result held by an institution. The waiver keeps the choice with the athlete, and limiting who sees the result keeps the information medical rather than administrative, so the requirement protects the athlete without taking away control of the information.
Reflection: The strongest counterargument is that any waiver signed under pressure to play is not a free choice; a fair version tells athletes, in writing, that declining the test cannot affect their spot on the team.
This model shows the level of evidence and organization needed to complete: Worked CER on a parallel case: a claim about whether a college may require its athletes to be tested for sickle cell trait before they play, two pieces of evidence, reasoning, and a reflection naming one counterargument. Models the CER format and depth for the access-to-results debate without answering today's own prompt about raw genetic results.
- Write one defensible claim.
- Choose specific evidence that supports the claim.
- Explain the scientific rule that connects the evidence to the claim.
Keep the structure. Replace the question, facts, measurements, and evidence. Then recheck units, vocabulary, and whether the conclusion goes beyond the evidence.
Also due today: Post your CER and reflection as one PDF to Schoology assignment Wk9 CER: Access-to-results debate.
A review board sorts scientific evidence, stakeholder needs, possible benefits, possible burdens, and uncertainty before choosing a policy.
- Which statements are scientific evidence?
- Which statements express a value or priority?
- Who receives the benefit and who carries the burden?
Use science to estimate consequences, then state the value judgment and tradeoff that determine the decision.
A review-board model organizes reasoning but does not make one ethical principle automatically outweigh every other principle.
- • Evidence cards map to source-backed findings.
- • Stakeholder cards map to affected people and priorities.
- • The recommendation maps to an explicit tradeoff with a named uncertainty.
Part 4 of 4 · Your work▸
Check your work before submitting
- You'll be able to argue a position on direct access to genetic results.
- You'll be able to address a counterargument with evidence.
4.1 Turn in your work
DueCheck the Schoology assignment for this day- Hand in
- One CER on direct patient access to raw genetic results plus a reflection naming one counterargument.
How to submit and name your file
Submit as one PDF in Schoology.
In Schoology, open your course and the assignment for this lesson. Attach your file, select Submit, and check that it appears in the submission.
PDF upload helpYou get two school days for every day you were absent, so this deadline moves with you.
Today's lesson is in Schoology
Each school day has one lesson page in Schoology that holds everything for the day: the goal, the story so far, every table and data value, the numbered steps, and what to turn in. Open it first and work from it. The other rows for this day, if any, are the score line for a paper quiz or test and the John Carroll debate item; they do not add work. Check Schoology for each deadline.
- Today's Lesson · Wed 10/21 · Wk9 · Four types of genetic disorders, then a genetic counseling case(today's lesson page: the goal, the data, the steps, and what to turn in are all on it)
Link will not open? Open Schoology, choose your course and section, and find the title shown above.
- CompleteEvery required part of the artifact is present, nothing left blank.
- AccurateThe science and the data are correct and match the evidence.
- Scientific reasoningYou explain your claim with evidence and reasoning (CER), not just an answer.
- Professional communicationClear, organized, labeled, and written the way a clinician or scientist would.
- SubmittedGo to Schoology to turn this in. Submit one PDF. Schoology attaches your name to your upload; on the page itself, write your period and code. Name the file: FirstName LastName - Assignment Title - YYYY-MM-DD.pdf. If you cannot get in, see Mr. Mendoza. Do not skip the work.
How this lesson connects
Keep using what you learned last class: A carrier holds one non-working allele but usually never gets sick, so an honest counseling memo must report reproductive odds without letting 'positive' be misread as a diagnosis. Today: Genetic results can be uncertain and easy to misread, so who controls access to them is an ethical decision that can protect or harm a patient.
Practice: try a question, then check your answer▸
Claim ceiling for this check: Today's evidence supports a classroom claim about access-to-results debate. It cannot prove causation, diagnose a real patient, or justify action outside this room.
A patient's report shows a variant labeled variant of uncertain significance. Why is this result hard to hand directly to the patient without a clinician?
Write an answer and pick a confidence to unlock the key.
Fast retrieval with instant answers, not the commit-then-reveal check above. Try each from memory first: write what you remember about the earlier units, then check yourself here.
Missed class or ready for more?▸
Optional practice for this unit's lab skills. Nothing in it is due today.
Friday is day. Review the diagram from Activity 2.1.2 Copying Our Genes: gel electrophoresis separates fragments by size, but those fragments must first be amplified by PCR. The PCR day itself is not on this calendar, so Friday's samples come already amplified; make sure you understand , , and extension before Friday so you can connect the two techniques.
What today's skills lead to. These are real health-science careers this course builds toward. Tap one to see, on the US Department of Labor's O*NET site, what the job actually involves, what it pays, and how fast it is growing.
Use to test how conserved is across humans, mice, and zebrafish.
Goes with: BLAST: is IRF6 conserved across species?
Search ClinVar for which changes are known to cause disease.
Goes with: ClinVar: which IRF6 changes cause disease?
Missed the live debate? Read the case brief (in myPLTW if it opens, otherwise the case summary in step 1 on this page), then submit a written CER on direct access to results plus your two questions and a reflection as one PDF to the Schoology assignment Wk9 CER: Access-to-results debate.
Submit as one PDF in Schoology.
Class still runs. Complete today's work as this page describes (it is self-guided). Need the concept taught without a teacher? Use this authoritative explainer:
Genetic Science Learning Center: Gel ElectrophoresisSources: slides, readings, and resources▸
The deck carries the prior idea forward, lets you inspect an analogy, maps the rule to biology, and ends with the same evidence decision and exit ticket used on this page.
Classroom documents for this lesson are posted in Schoology. Open Clever, then Schoology, and find each one by the name shown on its card.
Open this when the class reaches this activity and use it to complete the required lesson artifact.
Use this if you were absent, got stuck, or need another pass before you submit the lesson artifact.
Use this after the required lesson work when you are ready for a harder application or a deeper connection.
Sign in to Clever with your district Microsoft account to open Schoology or myPLTW. Follow today's posted steps. If myPLTW will not open, use the posted alternative and tell Mr. Mendoza. Turn in your completed work through the Schoology assignment.
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